Category Archives: Consent

Ancestry’s “Your DNA Sample Has Been Destroyed” Email

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Many AncestryDNA customers received an email from Ancestry stating that their DNA sample has been destroyed, as requested – but they did not make any request.

This email is generating a significant amount of confusion and angst.

  • These customers did NOT request that their DNA sample be destroyed.
  • Many people weren’t even aware that their sample had been retained. It’s not clear that their samples have/had been retained at this point.
  • Furthermore, many of these customers either have not signed up for the Human Diversity Project, or weren’t aware that they had.

Please note that destroying your DNA sample is NOT the same thing as removing or deleting your DNA RESULTS. The DNA sample is what is left over in the spit vial after processing. Your results would be unaffected. Deleting your results is an entirely separate and disconnected process not being discussed here.

Not an April Fools Joke

Yes, I know this is April 1st, but this is not an April Fool’s Joke, nor is it spam or a phishing attempt. The return email address seems quite legitimate, the same as other Ancestry communications, and Ancestry is aware that it was sent.

This appears to be an erroneous email issue. We have no idea what subgroup of customers received this email. Don’t you just hate it when your email system goes rogue like that:)

Several people have contacted Ancestry support and have been told a number of things:

  • It’s an erroneous email and Ancestry is having problems with their email system.
  • Their sample has NOT been destroyed.
  • Ancestry cannot tell them which sample is being referenced, for people who manage multiple samples.
  • Ancestry will get back with them.

I should also mention that this is not the first time this exact same thing has happened. Someone forwarded me this same email last fall.

It’s unclear whether any samples were actually destroyed, although I suspect this truly is simply an email issue.

However, as a consumer, it really doesn’t matter because there is nothing you can do with your stored sample at Ancestry anyway. No upgrades are or ever were available. Ancestry already destroyed their Y and mitochondrial DNA database in 2014, so that kind of testing clearly isn’t going to happen.

Sample Storage

Currently, during the kit activation process, you consent or do not consent to DNA sample storage.

You, the customer, cannot access this archived DNA for any reason, and there are no product upgrades. Ancestry’s short-lived health product required a new sample for processing.

There is no reason that benefits the customer to allow Ancestry to archive their DNA. If you opt-in to Ancestry’s Human Diversity Project, Ancestry will retain your DNA sample for additional processing.

You must explicitly choose to archive or not during kit activation.

It wasn’t always this way. For a long time, there was a question about whether or not the customer’s DNA sample was actually retained after processing. I’m still not sure about mine, because I was one of the earliest testers before the current options had been put in place. Here’s my 2012 consent process. In 2015, when Ancestry began monetizing our DNA, Judy Russell wrote about that here and I wrote about it here.

I should request the destruction of my DNA samples after this settles down and see what happens.

Hmmm…this could be confusing. For people who DID request the destruction of their DNA sample, and received this email, how do they know if their sample has actually been destroyed or if the email is erroneous? But I digress…

Opting-In or Out of the Human Diversity Project

Unless you opted-in to the “Human Diversity Project” which is Ancestry’s research project where they sell either your DNA or access to your DNA to collaborators or partners for unspecified research, there is no reason for Ancestry to retain your actual DNA sample.

Their email confirmed that their Human Diversity Project research partners perform additional processing on your DNA sample.

You can check or change your research consent settings under the “Settings” gear on the far right of your DNA page.

You can opt-in or out at any time, but if your DNA is already being used in a project when you change your mind, revocation of consent is not retroactive. Your DNA just won’t be used for any future research initiatives.

Here’s Ancestry’s Informed Consent document discussing the Human Diversity Project that everyone considering that option should read, thoroughly. Understand that you will not be notified if or when your sample is being used, nor what the research is for. I would be a lot more comfortable if customers could opt-in for specific research subjects/projects and it wasn’t just a “black box” of consent. Personally, I want to know where my DNA is and what it’s being used for.

If you have questions about any of this, please contact Ancestry support for clarification.

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Disclosure

I receive a small contribution when you click on some of the links to vendors in my articles. This does NOT increase the price you pay but helps me to keep the lights on and this informational blog free for everyone. Please click on the links in the articles or to the vendors below if you are purchasing products or DNA testing.

Thank you so much.

DNA Purchases and Free Transfers

Genealogy Products and Services

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Genealogy Research

Deleting DNA Results or Closing Your Account Does NOT Automatically = Destroying Your Original DNA Sample

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First and foremost, I want to state unequivocally that I am NOT advocating closing your account at any of the testing vendor sites. That’s not the purpose of this article. In fact, I encourage everyone to use each tool to extract every drop of information possible.

The purpose is to educate and inform you that IF you close your account and/or delete your DNA RESULTS from your account, even if the vendor in question says that the action is irreversible and you will need to resubmit a new sample and purchase a new test if you change your mind, that does NOT necessarily mean that your physical DNA sample itself will be destroyed unless you take separate action to request sample destruction. It also does not automatically reverse any previously-granted research permissions.

Many people presume that if they delete their results and/or close their account, that automatically means that their original spit or swab sample is destroyed – and that’s not necessarily true.

First, we need to understand the difference between:

  • A DNA sample
  • A DNA raw data results file, also referred to as a download file
  • DNA matches or a match file

The Difference Between a DNA Sample, Results and Download Files, and Matches

There are three distinct parts of the DNA testing process that people often confuse. It’s important to understand these distinct pieces because you interact with them differently and vendors do as well. In other words, deleting your DNA results file, or closing your account does not necessarily mean that your original sample is destroyed unless you request (and confirm) that separately.

DNA Sample – The DNA sample itself is the swab or vial of spit that you submit to the vendor for processing. That sample is sent to a lab where DNA is extracted and processed on a specific DNA chip that produces a file with roughly 700,000 locations for autosomal tests.

After your DNA results are processed and the vendor knows that they do not need to rerun your sample, how or if your DNA sample is stored, and where, is a function of each specific vendor and their policies.

One vendor, Family Tree DNA archives your DNA sample vials for 25 years as a free benefit so that you (or your heirs should you pass away) can order additional products or upgrades. FamilyTreeDNA offers various levels of Y DNA and mitochondrial DNA testing along with autosomal (Family Finder) results – so there are several upgrade avenues.

This short article, 4 Kinds of DNA for Genetic Genealogy, explains the difference between various kinds of DNA tests.

It’s less obvious why a vendor who does not offer genealogical DNA products other than autosomal testing would retain a customer’s actual DNA sample. The other three vendors, while they don’t currently offer additional genealogy DNA products, do offer health upgrades and purchase options. They may be retaining samples so that their customers could potentially upgrade and they would have a sample on-hand to rerun, if necessary.

Both MyHeritage and 23andMe offer a combined ancestry/genealogy plus health product initially, or customers can purchase the health add-on later. FamilyTreeDNA offers a high-end comprehensive Exome health product for existing customers, the Tovana Genome Report, but it’s a different test altogether and requires a fresh DNA sample. (Update – this information is no longer valid in 2021. Both Ancestry and FamilyTreeDNA have discontinued their health products.)

Furthermore, both Ancestry and 23andMe either conduct health/medical research internally and/or participate in research partnerships with outside entities and may be hoping that their customers will opt-in to research.

Regardless of the underlying reason why, keep in mind that your actual sample is likely being archived someplace, assuming there is any left after processing, unless you request that your sample be destroyed.

Refer to each vendor’s Terms and Conditions, their Privacy Policy along with any other linked documents to gain insight into how each vendor operates. Furthermore, one of those documents will provide instructions for how to request the destruction of your actual DNA sample, should you choose to do so.

All vendors change the contents of their Terms and Conditions along with other legal documents from time to time, so be sure to refer to the current version.

The DNA sample itself is NOT the same thing as the output from the processing, which is the DNA raw data results file.

DNA Raw Data Results File – The DNA results file contains only a small fraction of the three billion locations found in the human genome. Autosomal DNA tests include only about 700,000 (plus or minus) selected locations produced by the chip the vendor is utilizing. The output of the laboratory process is referred to as a raw data file or the DNA results file. People sometimes refer to this as the download file as well, because it’s the file you can download from each vendor.

The results in a raw data file look like this:

When you download and transfer your file from one vendor to another, the raw data file is what you are transferring. You can find instructions for downloading your data file from each vendor, here.

  • The DNA raw data or download file is NOT your actual DNA, which is what is extracted from the liquid in the vial.
  • The raw data or download file is NOT a list of your matches, which may or may not be a separate file available for downloading, depending on the vendor.

The raw data file only contains letters representing your two genotyped nucleotides (T, A, C or G) for the rsid (accession #) for each genetic address or position tested. Each genetic address contains two SNPs, or single nucleotide polymorphisms. You don’t need to understand the details, just that one nucleotide at that address is received from your mother and one from your father.

The example above shows my first 4 locations in my raw data file. You can see that I received an A from both parents at the first two locations, and a G from both parents and the second two locations.

Match File

The values in your DNA results file are compared to other people in the vendor’s database. If enough contiguous locations match, typically more than 500 matching SNPs, plus additional cM (centiMorgan) threshold match criteria, shown below, you are determined to be a match with that other person. You will each be placed on the other person’s match list, and the vendor will then provide additional processing based on the signature features they offer to their clients.

Of the four main vendors, three, Family Tree DNA, MyHeritage and 23andMe allow customers to download a match file in spreadsheet format that provides additional information about each match. Ancestry, unfortunately, does not.

You cannot upload your match file to other vendors – only your raw data file gets uploaded which the vendor then processes in the same way they would if you had tested at their company.

If someone on your match list wants to be included in the database at another vendor, they will either need to test at that vendor or transfer their file to that vendor. Every vendor has people in their database that the other vendors don’t have, so it behooves all genealogists to be in each of the four databases either by testing directly or uploading their raw data files as a transfer.

Of the four main vendors, FamilyTreeDNA and MyHeritage both accept transfers from other vendors and provide free matching, but 23andMe and Ancestry do not. Note that both FamilyTreeDNA and MyHeritage do charge for advanced features, $19 and $29, respectively, but in both cases, it’s significantly less than the cost of a test.

Deleting Results and Closing Accounts

Again, I am NOT advocating that anyone should close accounts at any vendor. In fact, I would discourage DNA deletion. Some people delete their DNA or close their accounts when other options would better serve their purposes. However, if you decide to do so, you need to be aware of the following:

  • If you have a genealogical tree/records research account at Ancestry or MyHeritage, you can delete your DNA results but maintain your genealogy research account, if you desire. You will lose the benefits of having a DNA test at that vendor if you delete your DNA test.
  • At those two vendors, if you delete your DNA, that does not automatically affect the genealogy side of your account except for combined features like ThruLines at Ancestry and Theories of Family Relativity at MyHeritage.
  • If you DOWNLOAD your DNA file, that does NOT delete the file at the original testing vendor unless you do so separately. Downloading only means that you download a copy of the file. Your original raw data results file is still at the vendor, UNLESS YOU CHOOSE TO DELETE YOUR RESULTS. Do not delete your results file unless you want to lose your matches and no longer participate in DNA testing or DNA-related features at that vendor.
  • If you are planning to delete your DNA results at a particular vendor, download a raw data file first, and verify that the file works correctly by uploading the file to one of the vendors that accepts transfers. Save the raw data file permanently on your computer. This preserves at least some of your testing investment and allows you to utilize your DNA results file elsewhere.
  • If you delete your DNA results at any of the major vendors, you cannot restore the results file at that vendor without repurchasing and resubmitting a new DNA test. For vendors who accept transfers, you could potentially re-upload your file as a transfer, but you would need to pay for advanced features.
  • If you delete your DNA results at vendors who do NOT offer additional genealogical research services, meaning at 23andMe and Family Tree DNA, there is no reason to maintain an account at that vendor.

If you delete your results or close your account at any vendor, it DOES mean that:

  • The DNA result you’ve deleted along with corresponding matches and other features are permanently gone. You cannot change your mind. Delete=permanent.
  • At FamilyTreeDNA, you can delete one kind of DNA test without deleting all types of DNA tests for a particular individual. For example, you could delete a Y DNA result but not delete mitochondrial or the autosomal Family Finder test.
  • You will have to pay to retest should you change your mind.

If you delete your results or close the DNA portion of your account, it DOES NOT necessarily mean that:

  • Your DNA sample is destroyed.
  • You’ve revoked any permissions previously given for participation in research.

You will need to perform both of these tasks separately and independently of deleting your DNA file at a vendor and/or closing your account.

Every Vendor is Different

The process of requesting sample destruction and revoking research permissions is different at each vendor, with or without closing your account.

Every vendor’s terms and conditions are separate and different. Some vendors may automatically close your account if you request sample destruction, and others won’t. Some may automatically delete your sample if you close your account, but I know for certain that’s not uniformly true.

Terms and conditions, as well as standard procedures, change over time as well.

I’m not telling you which vendors operate in which ways, because this article will someday be dated and vendor policies change. I don’t want to take the chance of leading someone astray in the future.

Therefore, if you wish to have your sample destroyed and/or revoke any research permissions previously granted, I strongly suggest that you call the vendor’s customer support and convey specifically what you want, and why. The vendor may offer alternatives to achieve what you desire without deleting your sample and account.

To delete your sample and/or account, you may need to provide your request in writing.

Request verification in writing that your sample has been destroyed and that any previously granted research authority/permission has been rescinded.

Research Permission

Please note that you can rescind previously granted research permission WITHOUT affecting your account in any other way. However, the reverse is not true – deleting your sample and closing your account does not automatically rescind previously-granted research permission.

You can only rescind permission for future research, not research already underway or completed that includes your DNA and corresponding answers to research questions.

Extra Steps

I hope you will continue to enjoy the results of your DNA tests for years to come. New features and benefits are added regularly, as are new matches – any one of which has the potential to break down that pesky brick wall. Equally as important, at least to me, is the legacy I’m leaving with my combined tree, DNA, and research work for future generations.

However, what’s right for me may not be right for you. If you make a different decision, be sure that you fully understand the different parts of DNA testing along with the various options and steps you may need to take to achieve your goal.

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Disclosure

I receive a small contribution when you click on some of the links to vendors in my articles. This does NOT increase the price you pay but helps me to keep the lights on and this informational blog free for everyone. Please click on the links in the articles or to the vendors below if you are purchasing products or DNA testing.

Thank you so much.

DNA Purchases and Free Transfers

Genealogy Products and Services

Genealogy Research

Genographic Project Participants: Last Chance to Preserve Your Results & Advance Science – Deadline June 30th

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If you’re one of the one million+ public participants in the National Geographic Society’s Genographic Project, launched in 2005, you probably already know that testing has ceased and the website will be discontinued as of June 30th. Your results will no longer be available as of that date.

I wrote about the closing here and you can read what the Genographic project has to say about closing the public participation part of the project, here.

However, this doesn’t have to be the end of the DNA story.

You have great options for yourself and to continue the science. Your results can still be useful, however…

You MUST act before June 30th.

Please note that if you control the DNA of a deceased person who did not test elsewhere, this is literally your last chance to obtain any DNA results for them. If you transfer their DNA, you can upgrade and purchase additional tests at Family Tree DNA. If you don’t transfer, the opportunity to retrieve their DNA will be gone forever.

Three Steps + a Bonus

  1. Preserve Your Results – Sign in to the Genographic site and take screenshots, print, or download any data you wish to keep.
  2. Contribute to Science – Authorize the Genographic Project to utilize your results for ongoing scientific research, including The Million Mito Project
  3. Transfer Your Results – If you tested before November 2016, you can transfer your results to FamilyTreeDNA and order upgrades if a sample remains

Here are step-by-step instructions for completing all three.

First – Preserve Your Results

Sign on to your account at The Genographic Project. You’ll notice an option to print your results.

Geno profile

Scroll down and take one last look. Did you miss anything?

Your profile page includes the ability to download your raw genetic data.

Geno profile option

Your Account page, below, will look slightly different depending on the version of the test you took, but the download option is present for all versions of the test.

Geno download

The download file simply shows raw data values at specific positions and won’t be terribly useful to you.

Geno nucleotides

Generally, it’s the analysis of what these mutations mean, or matching to others for genealogy, that people seek.

At the very bottom of your results page, you’ll see the option to Contribute to Science.

Geno contribute

Click on “How You Can Help.”

Second – Contribute to Scientific Research

The best way to assure the legacy of the Genographic Project is to opt-in for science research.

You can learn more about what happens when you authorize your results for scientific research, here.

Geno contribute box

Checking the little box authorizes anonymized scientific research on your sample now and in the future. This assures that your results won’t be destroyed on June 30th and will continue to be available to scientists.

The Genographic Project celebrated its 15th birthday in April 2020. Genographic Project data, including over 80,000 local and indigenous participants from over 100 countries, in addition to contributed public participation samples, has been included in approximately 85 research papers worldwide. Collaborative research is still underway. There’s still so much to learn.

Dr. Miguel Vilar, the lead scientist for the Genographic Project, is a partner in The Million Mito Project. The anonymized mitochondrial results of people who have opted-in for science will be available to that project, and others, through Dr. Vilar. Please support rewriting the tree of womankind by opting-in for scientific research.

Those words, “in the future” are the key to making sure this critical opportunity to continue the science doesn’t die.

If you don’t want to scroll down your page, you can access the scientific contribution authorization page directly from your profile.

Geno profile 2

To contribute to science, Click on the “My Contribution to Science” tab.”

Geno profile contribute

You’ll see the following screen. Then, check the box and click on the yellow “Contribute to Science” button. You’ll then be prompted with a few questions about your maternal and paternal heritage.

Geno check box

Contributing your results to science helps further scientific research into mankind, but transferring your results to FamilyTreeDNA preserves the usefulness of your DNA results for you and facilitates upgrading your DNA to obtain even more information.

Transferring also allows you to participate fully in The Million Mito Project which requires a full sequence mitochondrial DNA sample.

Third – Transfer Your Results to FamilyTreeDNA

If you tested before November 2016 when the Genographic Project switched to Helix for processing, you can transfer your results easily to Family Tree DNA.

If you don’t remember when you tested, sign in to your account. It’s easy to tell if transferring is an option.

Geno transfer option

If you are eligible to transfer, you’ll see this transfer option when you sign in.

Just click on the “Transfer Your Results” button. If you don’t want to sign in to Genographic to do the transfer, just click on this transfer link directly.

Geno transfer FTDNA

You will then see this no-hassle transfer option on the Family Tree DNA web page. Because FamilyTreeDNA did the laboratory processing for the Genographic Project from its inception in 2005 until November 2016, all you need to do is enter your Genographic kit number and the transfer takes place automatically.

Please note that if you DON’T transfer NOW, the Genographic Project is requesting the destruction of all non-transferred kits after June 30th, per their website.

Geno destroy

As you might imagine, preserving the DNA of a deceased person is critical if they didn’t test elsewhere and you have the authority to manage their DNA.

In order to support The Million Mito Project, Family Tree DNA is emailing a coupon to all people who transfer, offering a discount to upgrade to a full sequence mitochondrial DNA test.

After you transfer to Family Tree DNA, be sure to enter your earliest known ancestor and upload a tree. Here’s my “Four Quick Tips” article about getting the most out of mitochondrial DNA result, but it’s sage advice for Y DNA as well.

Bonus – Upgrade Transferred Kits

If you transfer your Genographic results to FamilyTreeDNA, you can then utilize the DNA sample provided for your Genographic DNA test for additional testing

Different versions of the Genographic Project testing provided various types of results for your DNA. In some versions, testers received 12 Y STR markers or partial mitochondrial DNA results, and in other versions, partial haplogroups. You can only transfer what the Genographic provided, of course, but once transferred, you can order products and upgrades at Family Tree DNA, assuming a sample remains.

This is important, especially if you control the kit for a loved one who has now passed away. This may be your only opportunity to obtain their Y, mitochondrial, and/or autosomal DNA results. For example, my mother passed away before autosomal DNA testing was possible, but I’ve since upgraded her test at Family Tree DNA and was able to do so because her DNA was archived.

Support Science

Please support The Million Mito Project and other academic research by:

  • Choosing to contribute to science through the Genographic project and
  • By transferring your results to Family Tree DNA so that you can learn more and upgrade

Both options are totally free, and both equally important.

Time is of the essence. You must act before June 30th.

Don’t let this be goodbye, simply au revior – the legacy of your DNA can live on in another place, another way, another day.

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Disclosure

I receive a small contribution when you click on some of the links to vendors in my articles. This does NOT increase the price you pay but helps me to keep the lights on and this informational blog free for everyone. Please click on the links in the articles or to the vendors below if you are purchasing products or DNA testing.

Thank you so much.

DNA Purchases and Free Transfers

Genealogy Products and Services

Genealogy Research

DNA Testing Sales Decline: Reason and Reasons

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If you’re involved in genetic genealogy, you’ve probably noticed the recent announcements by both 23andMe and Ancestry relative to workforce layoffs as a result of declining sales.

Layoffs

In January, 23andMe announced that it was laying off 100 people which equated to 14% of its staff.

Following suit, Ancestry this week announced that they are laying off 100 people, 6% of their work force. They discuss their way forward, here.

One shift of this type can be a blip, but two tends to attract attention because it *could* indicate a trend. Accordingly, several articles have been written about possible reasons why this might be occurring. You can read what TechCrunch says here, Business Insider here, and The Verge, here.

Depending on who you talk to and that person’s perspective, the downturn is being attributed to:

  • Market Saturation
  • No Repeat Sales
  • Privacy Concerns
  • FAD Over

Ok, So What’s Happening?

Between Ancestry and 23andMe alone, more than 26 million DNA tests have been sold, without counting the original DNA testing company, FamilyTreeDNA along with MyHeritage who probably have another 4 or 5 million between them.

Let’s say that’s a total of 30 million people in DNA databases that offer matching. The total population of the US is estimated to be about 329 million, including children, which means that one person in 10 or 11 people in the US has now tested. Of course, DNA testing reaches worldwide, but it’s an interesting comparison indicating how widespread DNA testing has become overall.

This slowing of new sales shouldn’t really surprise anyone. In July 2019, Illumina, the chip maker who supplies equipment and supplies to the majority of the consumer DNA testing industry said that the market was softening after a drop in their 2019 second quarter revenue.

Also last year, Ancestry and MyHeritage both announced health products, a move which would potentially generate a repeat sale from someone who has already tested their DNA for genealogy purposes. I suspected at the time this might be either a pre-emptive strike, or in response to slowed sales.

In November 2019, Family Tree DNA announced an extensive high-end health test through Tovana which tests the entire Exome, the portion of our DNA useful for medical and health analysis. (Note that as of 2021, the Ancestry and Tovana tests have been discontinued,)

In a sense, this health focus too is trendy, but moves away from genealogy into an untapped area.

23andMe who, according to their website, has obtained $791 million in venture capital or equity funding has always been focused on medical research. In July of 2018 GlaxoSmithKline infused $300 million into 23andMe in exchange for access to DNA results of their 5 million customers who have opted-in to medical research, according to Genengnews. If you divide the 300 million investment by 5 million opted-in customers, 23andMe received $60 per DNA kit.

That 5 million number is low though, based on other statements by 23andMe which suggests they have 10 million total customers, 80% of which opt-in for medical research. That would be a total of 8 million DNA results available to investors.

Divide $791 million by 8 million kits and 23andMe, over the years, has received roughly $99 for each customer who has opted in to research.

We know who Ancestry has partnered with for research, but not how much Ancestry has received.

There’s very big money, huge money, in collaborating with Big Pharma and others. Given the revenue potential, it’s amazing that the other two vendors, Family Tree DNA and MyHeritage, haven’t followed suit, but they haven’t.

Additionally, in January, 23andMe sold the rights to a new drug it developed in-house as a potential treatment for inflammatory diseases for a reported (but unconfirmed by 23andMe) $5 million.

It’s ironic that two companies who just announced layoffs are the two who have partnered to sell access to their opted-in customers’ DNA results.

My Thoughts

I’ve been asked several times about my thoughts on this shift within the industry. I have refrained from saying much, because I think there has been way too much “hair on fire” clickbait reporting that is fanning the flames of fear, not only in the customer base, but in general.

I am sharing my thoughts, and while they are not entirely positive, in that there is clearly room for improvement, I want to emphasize that I am very upbeat about this industry as a whole, and this article ends very positively with suggestions for exactly that – so please read through.

Regardless of why, fewer new people are testing which of course results in fewer sales, and fewer new matches for us.

My suspicion is that each of the 4 reasons given above is accurate to some extent, and the cumulative effect plus a couple of other factors is the reason we’re seeing the downturn.

Let’s take a look at each one.

Market Saturation

Indeed, we’ve come a very long way from the time when DNA was a verboten topic on the old RootsWeb mailing lists and boards.

Early DNA adopters back then were accused of “cheating,” and worse. Our posts were deleted immediately. How times have changed!

As the technology matured, 23andMe began offering autosomal testing accompanied by cousin matching.

Ancestry initially stepped into the market with Y and mitochondrial DNA testing, but ultimately destroyed that database which included Y and mitochondrial DNA results from Relative Genetics, a company they had previously acquired. People in those databases, as well as who had irreplaceable samples in Sorenson, which Ancestry also purchased and subsequently took offline permanently have never forgotten.

Those genealogists have probably since tested at Ancestry, but they may be more inclined to test the rest of their family at places like Family Tree DNA and MyHeritage who have chromosome browsers and tools that support more serious researchers.

I think a contributing factor is that fewer “serious genealogists” are coming up in the ranks. The perception that all you need to do is enter a couple of generations and click on a few leaves, and you’re “done” misleads people as to the complexity and work involved in genealogical research. Not to mention how many of those hints are inaccurate and require analysis.

Having said that, I view each one of these people who are encouraged for the first time by an ad, even if it is misleading in its simplicity, as a potential candidate. We were all baby genealogists once, and some of us stayed for reasons known only to us. Maybe we have the genealogy gene😊

But yes, I would agree that the majority, by far, of serious genealogists have already tested someplace. What they have not done universally is transferred from 23andMe and Ancestry to the other companies that can help them, such as MyHeritage, FamilyTreeDNA and GEDmatch. If they had, the customer numbers at those companies would be higher. We all need to fish in every pond.

Advertising and Ethnicity

The DNA ads over the last few years have focused almost exclusively on ethnicity – the least reliable aspect of genetic genealogy – but also the “easiest” to understand if a customer takes their ethnicity percentages at face value. And of course, every consumer that purchases a test as a result of one of these ads does exactly that – spits or swabs, mails and opens their results to see what they “are” – full of excited anticipation.

Many people have absolutely no idea there’s more, like cousin matching – and many probably wouldn’t care.

The buying public who purchases due to these ads are clearly not early adopters, and most likely are not genealogists. One can hope that at least a few of them get hooked as a result, or at least enter a minimal tree.

Unfortunately, of the two companies experiencing layoffs, only Ancestry supports trees. Genealogy revolves around trees, pure and simple.

23andMe has literally had years to do so and has refused to natively support trees. Their FamilySearch link is not the same as supporting trees and tree matching. Their attempt at creating a genetic tree is laudable and has potential, but it’s not something that can be translated into a genealogical benefit for most people. I’m guessing that there aren’t any genealogists working for 23andMe, or they aren’t “heard” amid the vervre surrounding medical research.

All told, I’m not surprised that the two companies who are experiencing the layoffs are the two companies whose ads we saw most often focused on ethnicity, especially Ancestry. Who can forget the infamous kilt/leiderhosen ad that Ancestry ran? I still cringe.

Many people who test for ethnicity never sign on again – especially if they are unhappy with the results.

Ancestry and 23andMe spent a lot on ad campaigns, ramped up for the resulting sales, but now the ads are less effective, so not being run as much or at all. Sales are down. Who’s to say which came first, the chicken (fewer ads) or the egg (lower sales.)

This leads us to the next topic, add on sales.

No Repeat Sales

DNA testing, unless you have something else to offer customers is being positioned as a “one and done” sale, meaning that it’s a single purchase with no potential for additional revenue. While that’s offered as a reason for the downturn, it’s not exactly true for DNA test sales.

Ancestry clearly encourages customers to subscribe to their records database by withholding access to some DNA features without a subscription. For Ancestry, DNA is the bait for a yearly repeat sale of a subscription. Genealogists subscribe, of course, but people who aren’t genealogists don’t see the benefit.

Ancestry does not allow transfers into their database, which would provide for additional revenue opportunity. I suspect the reason is twofold. First, they want the direct testing revenue, but perhaps more importantly, in order to sell their customer’s DNA who have agreed to participate in research, or partner with research firms, those customers need to have tested on Ancestry’s custom chip. This holds true for 23andMe as well.

Through the 23andMe financial information in the earlier section, it’s clear that while the consumer only pays a one time fee to test, multiple research companies will pay over and over for access to that compiled consumer information.

Ancestry and 23andMe have the product, your opted-in DNA test that you paid for, and they can sell it over and over again. Hopefully, this revenue stream helps to fund development of genetic genealogical tools.

MyHeritage also provides access to advanced DNA tools by selling a subscription to their records database after a free trial. MyHeritage has integrated their DNA testing with genealogical records to provide their advanced Theories of Family Relativity tool, a huge boon to genealogists.

While Family Tree DNA doesn’t have a genealogical records database like Ancestry and MyHeritage, they provide Y DNA and mitochondrial DNA testing, in addition to the autosomal Family Finder test. If more people tested Y DNA and mitochondrial DNA, more genealogical walls would fall due to the unique inheritance path and the fact that neither Y nor mitochondrial DNA is admixed with DNA from the other parent.

Generally, only genealogists know about and are going to order Y DNA and mtDNA tests, or sponsor others to take them to learn more about their ancestral lines. These tests don’t provide yearly revenue like an ongoing subscription, but at least the fact that Family Tree DNA offers three different tests does provide the potential for at least some additional sales.

Both MyHeritage and FamilyTreeDNA encourage uploads, and neither sell, lease or share your DNA for medical testing. You can find upload instructions, here.

In summary of this section, all of the DNA testing companies do have some sort of additional (potential) revenue stream from DNA testing, so it’s not exactly “one and done.”

Health Testing Products

As for health testing, 23andMe has always offered some level of health information for their customers. Health and research has always been their primary focus. Health and genealogy was originally bundled into one test. Today, DNA ancestry tests with the health option at 23andMe cost more than a genealogy-only test and are two separate products.

MyHeritage also offers a genealogy only DNA test and a genealogy plus health DNA test.

In 2019, both Ancestry and MyHeritage added health testing to their menu as upgrades for existing customers.

In November 2019, FamilyTreeDNA announced an alliance with Tovana for their customers to order a full exome grade medical test and accompanying report. I recently received mine and am still reviewing the results – they are extensive.

It’s clear that all four companies see at least some level of consumer interest in health and traits as a lucrative next step.

Medical Research and DNA Sales

Both Ancestry and 23andMe are pursuing and have invested in relationships with research institutions or Big Pharma. I have concerns with how this is handled. You may not.

I’m supportive of medical research, but I’m concerned that most people have no idea of the magnitude and scope of the contracts between Ancestry and 23andMe with Big Pharma and others, in part, because the details are not public. Customers may also not be aware of exactly what they are opting in to, what it means or where their DNA/DNA results are going.

As a consumer, I want to know where my DNA is, who is using it, and for what purpose. I don’t want my DNA to wind up being used for a nefarious purpose or something I don’t approve of. Think Uighurs in China by way of example. BGI Genetics, headquartered in China but with an Americas division and facilities in Silicon Valley has been a major research institute for years. I want to know what my DNA is being used for, and by whom. The fact that the companies won’t provide their customers with that information makes me makes me immediately wonder why not.

I would like to be able to opt-in for specific studies, not blindly for every use that is profitable to the company involved, all without my knowledge. No blank checks. For example, I opted out of 23andMe research when they patented the technology for designer babies.

Furthermore, I feel that if someone is going to profit from my DNA, it should be me since I paid for the sequencing. At minimum, a person whose DNA is used in these studies should receive some guarantee that they will be provided with any drug in which their DNA is used for development, in particular if their insurance doesn’t pay and they cannot afford the drug.

Drug prices have risen exponentially in the US recently, with many people no longer able to afford their medications. For example, the price of insulin has tripled over the last decade, causing people to ration or cut back on their insulin, if not go without altogether. It would be the greatest of ironies if the very people whose DNA was sold and used to create a drug had no access to it.

Of course, Ancestry and 23andMe are not required to inform consumers of which studies their DNA or DNA results are used for, so we don’t know. Always read all of the terms and conditions, and all links when authorizing anything.

Both companies indicate that your DNA results are anonymized before being shared, but we now know that’s not really possible anymore, because it’s relatively easy to re-identify someone. This is exactly how adoptees identify their biological parents through genetic matches. Dr. Yaniv Erlich reported in the journal Science November 2018 that more than 60% of Europeans could be reidentified through a genealogy database of only 1.28 million individuals.

I think greater transparency and a change in policy favoring the consumer would go a long way to instilling more confidence in the outside research relationships that both Ancestry and 23andMe pursue and maintain. It would probably increase their participation level as well if people could select the research initiatives to which they want to contribute their DNA.

Privacy Concerns

The news has been full of articles about genetic privacy, especially in the months since the Golden State Killer case was solved. That was only April 2018, but it seems like eons ago.

Unfortunately, much of what has been widely reported is inaccurate. For example, no company has ever thrown the data base open for the FBI or anyone to rummage through like a closet full of clothes. However, headlines and commentary like that attract outrage and hundreds of thousands of clicks. In the news and media industry, “it’s all about eyeballs.”

In one case, an article I interviewed for extensively in an educational capacity was written accurately, but the headline was awful. The journalist in question replied that the editors write the headlines, not the reporters.

One instance of this type of issue would be pretty insignificant, but the news in this vein hasn’t abated, always simmering just below the surface waiting for something to fan the flames. Outrage sells.

For the most part, those within the genealogy community at least attempt to sort out what is accurate reporting and what is not, but those people are the ones who have already tested.

People outside the genealogy community just know that they’ve now seen repeated headlines reporting that their genetic privacy either has been, could be or might be breached, and they are suspicious and leery. I would be too. They have no idea what that actually means, what is actually occurring, where, or that they are probably far more at risk on social media sites.

These people are not genealogists, and now they look at ads and think to themselves, “yes, I’d like to do that, but…”

And they never go any further.

People are frightened and simply disconnect from the topic – without testing.

If, as a consumer, you see several articles or posts saying that <fill in car model> is really bad, when you consider a purchase, even if you initially like that model, you’ll remember all of those negative messages. You may never realize that the source was the competition which would cause you to interpret those negative comments in a completely different light.

I think that some of the well-intentioned statements made by companies to reassure their existing and potential customers have actually done more harm than good by reinforcing that there’s a widespread issue. “You’re safe with us” can easily be interpreted as, “there’s something to be afraid of.”

Added to that is the sensitive topic of adoptee and unknown parent searches.

Reunion stories are wonderfully touching, and we all love them, but you seldom see the other side of the coin. Not every story has a happy ending, and many don’t. Not every parent wants to be found for a variety of reasons. If you’re the child and don’t want to find your parents, don’t test, but it doesn’t work the other way around. A parent can often be identified by their relatives’ DNA matches to their child.

While most news coverage reflects positive adoptee reunion outcomes, that’s not universal, and almost every family has a few lurking skeletons. People know that. Some people are fearful of what they might discover about themselves or family members and are correspondingly resistant to DNA testing. Realizing you might discover that your father isn’t your biological father if you DNA test gives people pause. It’s a devastating discovery and some folks decide they’d rather not take that chance, even though they believe it’s not possible.

The genealogical search techniques for identifying unknown parents or close relatives and the technique used by law enforcement to identify unknown people, either bodies or perpetrators is exactly the same. If you are in one of the databases, who you match can provide a very big hint to someone hunting for the identify of an unknown person.

People who are not genealogists, adoptees or parents seeking to find children placed for adoption may be becoming less comfortable with this idea in general.

Of course, the ability for law enforcement to upload kits to GedMatch/Verogen and Family Tree DNA, under specific controlled conditions, has itself been an explosive and divisive topic within and outside of the genealogy community since April 2018.

These law enforcement kits are either cold case remains of victims, known as “Does,” or body fluids from the scenes of violent crimes, such as rape, murder and potentially child abduction and aggravated assault. To date, since the Golden State Killer identification, numerous cases have produced a “solve.” ISOGG, a volunteer organization, maintains a page of known cases solved, here.

GEDmatch encourages people to opt-in for law-enforcement matching, meaning that their kit can be seen as a match to kits uploaded by law enforcement agencies or companies working on behalf of law enforcement agencies. If a customer doesn’t opt-in, their kit can’t be seen as a match to a law enforcement kit.

Family Tree DNA initially opted-out all EU kits from law enforcement matching, due to GDPR, and provides the option for their customers to opt-out of law-enforcement matching.

Neither MyHeritage, Ancestry nor 23andMe cooperate with law enforcment under any circumstances and have stated that they will actively resist all subpoenaes in court.

ISOGG provides a FAQ on Investigative Genetic Genealogy, here.

The two sides of the argument have rather publicly waged war on each other in an ongoing battle to convince people of the merits of their side of the equation, including working with news organizations.

Unfortunately, this topic is akin to arguing over politics. No one changes their mind, and everyone winds up mad.

Notice I’m not linking any articles here, not even my own. I do not want to fan these flames, but I would be remiss if I didn’t mention that the topic of law enforcement usage itself, the on-going public genetic genealogy community war and resulting media coverage together have very probably contributed to the lagging sales. I’d also be remiss if I didn’t mention that while a great division of opinion exists, and many people are opposed, there are also many people who are extremely supportive.

All of this, combined, intentionally or not, has introduced FUD, fear, uncertainty and doubt – a very old disinformation “sales technique.”

In a sense, for consumers, this has been like watching pigs mud-wrestle.

As my dad used to say, “Never mud-wrestle with a pig. The pig enjoys it, you get muddy and the spectators can’t tell the difference.” The spectators in this case vote with their lack of spending and no one is a winner.

DNA Testing Was A FAD

Another theory is that genealogy DNA testing was just a FAD whose time has come and gone. I think the FAD was ethnicity testing, and that chicken has come home to roost.

Both 23andMe and Ancestry clearly geared up for testers attracted by their very successful ads. I was just recently on a cruise, and multiple times I heard people at another table discussing their ethnicity results from some unnamed company. They introduced the topic by saying, “I did my DNA.”

The discussion was almost always the same. Someone said that they thought their ethnicity was pretty accurate, someone else said theirs was awful, and the discussion went from there. Not one time did anyone ever mention a company name, DNA matching or any other functionality. I’m not even sure they understood there are different DNA testing companies.

If I was a novice listening-in, based on that discussion, I would have learned to doubt the accuracy of “doing my DNA.”

If most of the people who purchased ethnicity tests understood in advance that ethnicity testing truly is “just an estimate,” they probably wouldn’t have purchased in the first place. If they understood the limitations and had properly set expectations, perhaps they would not have been as unhappy and disenchanted with their results. I realize that’s not very good marketing, but I think that chicken coming home to roost is a very big part of what we’re seeing now.

The media has played this up too, with stories about how the ethnicity of identical twins doesn’t match. If people bother to read more than the headline, and IF it’s a reasonably accurate article, they’ll come to understand why and how that might occur. If not, what they’ll take away is that DNA testing is wrong and unreliable. So don’t bother.

Furthermore, most people don’t understand that ethnicity testing and cousin matching are two entirely different aspects of a DNA test. The “accuracy” of ethnicity is not related to the accuracy of cousin matching, but once someone questions the credibility of DNA testing – their lack of confidence is universal.

I would agree, the FAD is over – meaning lots of people testing primarily for ethnicity. I think the marketing challenge going forward is to show people that DNA testing can be useful for other things – and to make that easy.

Ethnicity was the low hanging fruit and it’s been picked.

Slowed Growth – Not Dead in the Water

The rate of growth has slowed. This does not by any stretch of the imagination mean that genetic genealogy or DNA testing is dead in the water. DNA fishes for us 365x24x7.

For example, just today, I received a message from 23andMe that 75 new relatives have joined 23andMe. I also received match notifications from Family Tree DNA and MyHeritage.  Hey – calorie-free treats!!!

These new matches are nothing to sneeze at. I remember when I was thrilled over ONE new match.

I have well over 100,000 matches if you combine my matches at the four vendors.

Without advanced tools like triangulation, Phased Family Matching, Theories of Family Relativity, ThruLines, DNAPainter, DNAgedcom and Genetic Affairs, I’d have absolutely no prayer of grouping and processing this number of matches for genealogy.

Even if I received no new matches for the next year, I’d still not be finished analyzing the autosomal matches I already have.

This Too Shall Pass

At least I hope it will.

I think people will still test, but the market has corrected. This level of testing is probably the “new normal.”

Neither Ancestry or 23andMe are spending the big ad dollars – or at least not as big.

In order for DNA testing companies to entice customers into purchasing subscriptions or add-on products, tools need to be developed or enhanced that encourage customers to return to the site over and over. This could come in the form of additional results or functionality calculated on their behalf.

That “on their behalf” point is important. Vendors need to focus on making DNA fun, and productive, not work. New tools, especially in the last year or two, have taken a big step in that direction. Make the customer wonder every day what gift is waiting for him or her that wasn’t there yesterday. Make DNA useful and fun!

I would call this “DNA crack.” 😊

Cooking Up DNA Crack!

In order to assist the vendors, I’ve compiled one general suggestion plus what I would consider to be the “Big 3 Wish List” for each of their DNA products in term of features or improvements that would encourage customers to either use or return to their sites. (You’re welcome.)

I don’t want this to appear negative, so I’ve also included the things I like most about each vendor.

If you have something to add, please feel free to comment in a positive fashion.

Family Tree DNA

I Love: Y and Mitochondrial DNA, Phased Family Matching, and DNA projects

General Suggestion – Fix chronic site loading issues which discourage customers

  • Tree Matching – fix the current issues with trees and implement tree matching for DNA matches
  • Triangulation – including by match group and segment
  • Clustering – some form of genetic networks

MyHeritage

I Love: Theories of Family Relativity, triangulation, wide variety of filters, SmartMatches and Record Matches

General – Clarify confusing subscription options in comparative grid format

  • Triangulation by group and segment
  • View DNA matches by ancestor
  • Improved Ethnicity

Ancestry

I Love: Database size, ThruLines, record and DNA hints (green leaves)

General – Focus on the customers’ needs and repeated requests

  • Accept uploads
  • Chromosome Browser (yes, I know this is a dead horse, but that doesn’t change the need)
  • Triangulation (dead horse’s brother)

23andMe

I Love: Triangulation, Ethnicity quality, ethnicity segments identified, painted and available for download

General – Focus on genealogy tools if you’re going to sell a genealogy test

  • Implement individual customer trees – not Family Search
  • Remove 2000 match limit (which is functionally less after 23andMe hides the people not opted into matching)
  • DNA + Tree Matching

Summary

In summary, we, as consumers need to maintain our composure, assuring others that no one’s hair is on fire and the sky really is not falling. We need to calmly educate as opposed to frighten.

Just the facts.

Other approaches don’t serve us in the end. Frightening people away may “win” the argumentative battle of the day, but we all lose the war if people are no longer willing to test.

This is much like a lifeboat – we all succeed together, or we all lose.

Everybody row!

As genealogists, we need to:

  • Focus on verifying ancestors and solving genealogy challenges
  • Sharing those victories with others, including family members
  • Encourage our relatives to test, and transfer so that their testing investment provides as much benefit as possible
  • Offer to help relatives with the various options on each vendor’s platform
  • Share the joy

People share exciting good news with others, especially on Facebook and social media platforms, and feel personally invested when you share new results with them. Collaboration bonds people.

A positive attitude, balanced perspective and excitement about common ancestors goes a very, very long was in terms of encouraging others.

We have more matches now than ever before, along with more and better tools. Matches are still rolling in, every single day.

New announcements are expected at Rootstech in a couple short weeks.

There’s so much opportunity and work to do.

The sky is not falling. It rained a bit.

The seas may have been stormy, but as a genealogist, the sun is out and a rising tide lifts us all.

Rising tide

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Disclosure

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Thank you so much.

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Things That Need To Be Said: Victims, Murder, and Judgement

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moccasin

Unfortunately, the events that have unfolded during the last few months relative to using genetic genealogy data bases in order to identify murder victims and perpetrators of those murders have divided the genetic genealogy community.

Polls show that most people are in favor of this usage, some polls approaching 90% in favor. Within the community, the opinion is divided, with many of the leaders on opposite ends of the spectrum for various reasons.

I’d like to discuss this division and the inherent judgement – as rationally and as unemotionally as this topic can be.

I’m not going to list cases or examples. There have been many since the first case identified through genetic genealogy, the Golden State Killer, broke in May of 2018. At that time, the GSK case was plastered all over every news outlet, but today the announcements are less dramatic, approaching routine, often only covered in the local news. I don’t know whether that’s a good thing or a bad thing. These cases have become normalized in the same way that discovering unknown parents or siblings has in the past couple of years. It’s a daily unremarkable occurrence now – unless it happens to you of course.

GedMatch was utilized to solve the earliest cases.

In late January, Family Tree DNA announced that they too are allowing law enforcement uploading, implementing a more restrictive approach than GedMatch wherein controlled, pre-screened and registered forensic samples can be upload after approval by law enforcement for matching and will be tracked internally by Family Tree DNA. These cases all involve violent crimes meaning unidentified victims, murder and rape. You can read their Law Enforcement FAQ here and their Law Enforcement Policy here. As opposed to early click-bait news articles, Family Tree DNA has not and never did “turn over” their data base to the FBI and neither did GedMatch. Forensic kits work the same way everyone else’s kits work – and nothing more. Please also note that this matching and identification process is the exact same process created several years ago within the community to identify unknown parents.

Ancestry, 23andMe and MyHeritage do not support law enforcement matching.

If you don’t want your kit utilized for law enforcement matching. You can opt out of matching at GedMatch by selecting the “research” option where you can see matches to the kit, but other people can’t see you.

At Family Tree DNA, all European Union customers are now automatically opted out but can opt-in, and all non-EU customers have the option of opting out by turning off law enforcement matching if they don’t want their kits to show as a match to law enforcement kits.

I don’t think there’s a soul alive that will argue that we don’t want rapists and murderers apprehended and off the streets. We individually and as a society want them to be identified and held accountable for their crimes. In some cases, the perpetrators are living freely and don’t appear to have committed additional crimes, but still, they need to pay for what they did. Depriving another human of their life or raping them is simply not acceptable. That’s how the justice system in the US works and the job of law enforcement to find those who break the law and bring them to justice.

Another aspect of forensic DNA matching that has gone largely unmentioned is that if a person is wrongly convicted of a violent crime, and DNA evidence from the scene remains, DNA matching can also exonerate the innocent. DNA matching technology has improved dramatically in the past decades, moving from the 26 CODIS markers to the 700,000+ SNP markers utilized today for genealogy matching.

The Great Divide

However, the great divide is whether or not law enforcement should be allowed to upload forensic samples extracted from the victim or taken from other evidence at the crime scene (such as blood or semen, for example) to genetic genealogy data bases in order to identify these people – and in what circumstances.

In a recently solved case, a live-born baby abandoned intentionally to freeze to death by his mother in a ditch in 1981, in the northern US, in February, was identified which also identified the parents. This case has illuminated a huge divide in the community.

It has also surfaced something I had never really thought about, illustrating why we need to attempt to remain free from judgement, as much as possible. By this, I mean that we need to listen to the points of all parties involved, weigh what they are saying and try to understand their perspective. That doesn’t mean we need to change our minds, but we do need to see if the “opposing counsel” has points that need to be considered. Unfortunately, when it’s a topic we feel strongly about, it’s so easy to rush to judgement.

Sometimes the problem is a lack of education or understanding.

The Legal Process

It recently came to light from a discussion that someone outside the US had no comprehension of how the US law enforcement process works. In the US, there are three distinct stages:

  • Investigation and gathering of evidence – This is where DNA matching is BUT ONE CLUE in the investigatory steps of whether a crime occurred and who should be charged. When the investigators are finished, they may arrest someone, book them into jail, and send the paperwork to the prosecutor who will decide what charges, if any, are to be filed against that person.
  • Prosecution – From the time the charges are filed, the prosecutor’s job is to present the evidence to the court that a crime was committed along with any extenuating circumstances. The attorney for the accused person presents the evidence to favor them, such as an alibi, an insanity plea, or evidence that they are somehow mentally incapacitated.
  • Courts -. While they are awaiting trial, the judge will decide if the person arrested can post bail in order to be released from jail while awaiting their trial date. Different factors are taken into consideration. Whether or not they are a flight risk and the severity of the crime rank high among the criteria. Ultimately the person is either convicted or found not guilty of the charges. If they are found not guilty, it’s all over. If they either plead guilty or are found guilty of some or all of the crimes with which they were charged, then the sentencing phase begins wherein the judge decides what punishment fits the crime and considers any extenuating circumstances. For example, when someone is found guilty but insane, they won’t serve time in prison, but will be remanded to a psychiatric facility for treatment instead. Many factors are involved with sentencing including victims’ statements, statements from the families of the victims, extenuating circumstances and any requests for leniency.

The person from outside the US thought that the DNA evidence automatically just convicted the person. Even people in the US may be reacting emotionally, without understanding the steps in the legal process designed to be as fair and equitable as possible.

This is Intensely Emotional

Over the last several weeks, I’ve had the opportunity to talk individually with many community members. I’ve come to realize that these cases bring to the surface issues of rape, murder, incest, parental abandonment and child abuse (including sexual) by parents and family members that people continue to love anyway. Needless to say, this situation creates extremely conflicting emotions and resurrects long-buried pain for many.

Almost everyone I’ve talked to has their own intensely personal and oftentimes gut-wrenching reason for feeling the way they do about the situation at hand. The revelations have been as astounding as they have been heartbreaking and are a true testament to the triumph of the human spirit. People can and do survive, but not unscarred. Most people hide those scars – sometimes from everybody and sometimes forever.

When I hear their stories, I suddenly understand WHY they personally feel the way they do, even if I don’t agree. It takes the edge off of the purely academic discussion of the technicalities of why or why not these data bases should or should not be utilized.

Suffice it to say, that cow has left the barn. They are being utilized and probably were before we knew it. It’s much better to have a process in place and consumer knowledge that it’s occurring, allowing people to make their own participation decisions.

Do I wish this process had been handled a bit differently? Yes, certainly, but this is literally the frontier – the leading bleeding edge. I’m afraid that if someone hadn’t taken the bull by the horns, it would never have happened because the topic would have been debated into oblivion. There is simply no way to achieve an agreement from polar opposite yes/no positions involving topics this emotional.

I’m actually surprised that this didn’t happen sooner, because the technology has been available for years.

There are some people who stand to benefit personally from one position or the other or have an ax to grind. After eliminating anyone with obvious opportunistic motivations or bias from the mix, the rest of the people have a very valid reason for feeling the way they do. People’s feelings can’t be right or wrong – whether or not I agree with them.

We don’t need to demonize the individual to disagree. It’s OK to disagree without attacking others and still respect them as individuals and remain on speaking terms. Perhaps the understanding we gain will even deepen our appreciation for them and what they have endured. Agreement isn’t required for that to happen.

It benefits us all to row in the same direction, together. We have the same love, genetic genealogy.

My Own Perspective

I am a supporter of utilizing the tools at our disposal for identifying the victims and perpetrators of violent crimes, defined as rape and murder. I would personally be comfortable adding aggravated assault in cases such as where an 80+ year old woman was beaten nearly to death in a robbery, but that’s not my call to make.

For now, I would be happy to simply process the backlog of the hundreds of thousands of rape kits that have never been tested and identify the plethora of cold case unknown murder victims that include many children.

This is very personal to me for a variety of reasons. I’m going to share one of them with you.

Here’s where I take the deep breath.

My child was kidnapped more than 30 years ago and was missing for several weeks. Even today, just thinking about or typing this, I can feel my chest tighten, my heart rate elevate and my blood pressure rise. There are simply no adequate words.

My child was one of the lucky ones, “recovered” several weeks later in another state roughly 1000 miles away.

The word terror doesn’t even begin to describe my emotions.

There was not one minute of one day that I didn’t very clearly know that my child might never come home.

That my child might already be dead, buried in some shallow grave I would never find.

Or with animals gnawing on their tiny body.

Maybe starving.

Maybe hurt but not dead…yet.

Maybe floating bloated in some river someplace.

Or, that they might be being used in the child pornography industry or even worse, tortured in snuff movies. (If you don’t know what that is, just trust me and don’t google it.)

If you sit down for one minute, put yourself in my position and think about this as your own child, or grandchild, you will understand fully why I fully support the use of genetic genealogy databases for the identification of victims and those who victimize.

Even if I didn’t support this position, it’s a done deal now. It’s already been happening for almost a year.

In the case of the mother who abandoned the baby to die in the freezing cold – if there are extenuating circumstances that should be considered in terms of the mother’s behavior or mental condition, they will be revealed at the trial and taken into consideration.

If a rapist or murderer should receive leniency or be judged mentally incompetent in other cases, that evidence too will come before the judge. Let’s not conflate the investigation and gathering of information and evidence stage with the prosecution and sentencing after a perpetrator either pleaded guilty or was found guilty. We should NOT stop investigating and identifying victims and perpetrators because some of the people who committed these crimes might have extenuating circumstances. The evidence must stand on its own – all of it, together as a whole.

Here’s the important part. Without the genetic genealogy data bases, the victims and perpetrators of these cold cases would never be identified. My child could have been one those bodies. I will never forget. Every time a new victim is identified, I’m grateful all over again that it’s not my child but so glad for the families to finally have closure.

At the same time, as we talk to and read what our fellow genetic genealogists have to say, we must realize that while they aren’t telling you their personal story, many of which are simply far too intimate and painful to divulge, they have them just the same and those experiences inform their opinions. They may be writing or speaking from a place of great sorrow and betrayal, from a place of anger or from a place of healing – but they are speaking from an extremely personal space. All you are hearing is their opinion based on things you don’t understand.

It’s possible to empathize, and still disagree.

I can tell you with no hesitation whatsoever that if my child had not been found, I would go to the literal ends of the earth for the identification of their body AND for the conviction of their kidnapper/murderer.

Every time I read about an unidentified body, I remember those days, so seared into my memory that I can never forget.

So seared in that I still, to this day, have nightmares and wake up terrified – awake for the rest of the night.

So seared into my brain that 3+ decades later I still can’t even talk or write about this without crying. I don’t mean an escaped tear – I mean full on tears-streaming-down-my-face embarrassing ugly-crying.

Every.  Single.  Time.

So seared into my memory that today I still utterly despise the kidnapper with every ounce of my being.

That said, I was truly one of the lucky ones, as was my child.

I can’t offer these less fortunate families their family member back, bring their child back to life or un-rape them, but I can help to offer them closure and justice by including my DNA in both data bases. I fervently hope my DNA can help.

At this point with the technology and data bases available, it would be negligent of law enforcement NOT to utilize the available tools to identify victims and their murderers. As a society, why would be not embrace this opportunity so long as people have the opportunity not to participate if they wish?

In or Out?

My DNA absolutely stays in the databases.

I was rather shocked at first, last May when the GSK case first broke, and I didn’t know what to think, truthfully. Over the ensuing months, my position has become clear in my own mind, especially as I’ve seen the results pour forth.

My biggest regret is the division within the community that this has caused.

My fear is the knee-jerk over-regulation that may follow based on inaccurate reporting, fear and a rush to “do something.”

It’s Your Decision

As strongly as I feel about this topic, I encourage everyone to listen to the different perspectives and not stand in judgement of the people voicing those opinions. We don’t know what that walk in their moccasins looked like. It may have been and may still be torturous. We often move on, only to have the thin scab ripped off when emotional situations involving the most primal bond of nature, mothers and their entirely dependent babies, rape and murder surface.

I don’t know anyone who hasn’t been individually affected by these horrific crimes, meaning rape or murder – either personally or someone within their family. If you think your family is exempt, it’s probably because the victim has never divulged what happened.

When all is said and done, you’ll need to make your own personal decision about how to handle your DNA according to your life’s journey, conscience and moral compass. You can leave it in the data bases if it’s already there, transfer it in to both to support law enforcement matching, or you can opt out entirely. Make the decision that’s right for you. The good news is that with an off-on toggle switch, you can change your mind in either direction at any time.

______________________________________________________________

Please note that I am a member of the Citizen’s Panel formed in late February by Family Tree DNA to provide feedback on ethics and policy questions. I provided a list of questions, concerns and suggestions to Family Tree DNA after their initial law enforcement announcement in late January and before their recent update on March 12th. The Citizen’s Panel is an entirely volunteer (uncompensated) position and I serve along with:

  • Katherine Borges – Director of ISOGG (International Society of Genetic Genealogy)
  • Kenyatta Berry – Professional genealogist, host of PBS’s Genealogy Road Show
  • Dr. Maurice Gleeson – Genetic genealogist, speaker and organizer of the Genetic Genealogy Conference in Ireland, and FamilyTreeDNA volunteer Group Project Administrator
  • Dr. Tim Janzen – Family Practice physician, long-time genealogist, genetic genealogy lecturer for Oregon’s local ISOGG group and other genetic genealogy conferences, and FamilyTreeDNA volunteer Group Project Administrator
  • Amy McGuire – Lawyer and Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at the Baylor College of Medicine
  • Bob McLaren – An early adopter of genetic genealogy and FamilyTreeDNA volunteer Group Project Administrator

The Golden State Killer and DNA

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Joseph DeAngelo, 2018 mugshot, alleged Golden State Killer

Unless you’ve been living under a rock for the past few days, you already know that the Golden State Killer has, it appears, been apprehended by:

  1. Sequencing DNA from the original crime scene
  2. Uploading those results to a genealogy data base to utilize techniques currently used for unknown parent searches to suggest or identify the killer
  3. Then, to confirm that they had identified the right person, discarded DNA from the suspect was sequenced which apparently matched the original DNA from the crime scene

I say “it appears” because remember, until he’s convicted, Joseph DeAngelo is still a suspect.

I have received more messages, texts and e-mails about this one topic than any other, ever. My phone has been buzzing like an angry bee with too much caffeine for days.

Unfortunately, in many news articles, the topic suffers from dramatic over-simplification at best and significant errors at worst. This combined with lots of fear stirs a toxic brew.

In almost all cases, the author writing the article clearly didn’t understand the subject matter at hand. Many leaders in the genetic genealogy community have been asked for comment. Having had more than one situation in which I was misquoted or my quote was taken out of context, I am discussing the issue in this article, where my comments aren’t boiled down to a one sentence sound bite. I don’t want anyone making a knee-jerk reaction with partial information. This topic deserves, and must receive much more discussion in a calm, informed manner.

There is a great deal of concern, curiosity, misinformation and incorrect assumptions in the genetic genealogy community as well as the media, along with emotions running at high tide.

I think it’s important to do three things:

  1. Discuss what actually happened.
  2. Discuss how genealogy versus both unknown parent and forensic searching differs from genealogy searching.
  3. Discuss associated concerns.

The Case

The Golden State Killer has been accused of at least 12 murders, more than 50 rapes and many burglaries primarily from June 1975 through May 1986. DNA evidence was collected, but DNA testing at that time had not progressed to the point where the culprit was able to be identified by utilizing his DNA.

A lot has changed, both in terms of DNA technology and other resources available since that time.

Last week, on April 25th, Joseph DeAngelo, now in his 70s, was arrested after DNA matching implicated him as the Golden State Killer. The news is ripe with stories, but this NPR article is a good summary as are the references at that bottom of the wiki article linked above.

Initial Concerns

Initially, two questions were being asked.

  • Which genetic genealogy company “cooperated” with law enforcement?
  • Did law enforcement have a search warrant?

As it turns out, the answer is that no testing companies “cooperated” and that no  search warrant was needed.

The next question was, “How safe is my DNA?”

Let’s talk about what happened, how it was done and how it affects each of us.

Disclosure

I was not involved with this or any similar case in any capacity, although I have been working the past few days to ferret out what actually happened, including discussing this privately and in public forums.

However, I am familiar with the techniques used as a result of my involvement with archaeological digs and ancient DNA, and I’d like to discuss what actually happened, as best we can unravel to date.

DNA Collection

At the time of the rapes and murders committed by the Golden State Killer, one police officer froze extra samples of the evidence, just in case, for the future. That future has arrived.

In the past few years, whole genome sequencing of ancient DNA and degraded samples has become possible. Probably the most notable are the Neanderthal and Denisovan genome reconstructions, beginning in 2010, but sequencing of forensic samples has become commonplace in the past few years.

From those ancient sequences, as long ago as September 2014, whole genome sequences were being reduced to just the DNA locations supported by GedMatch and the resulting compatible files uploaded there for comparison to other testers. This was possible because the raw data files are made available to testers by testing companies, so testers can modify the files in any way they see fit without the cooperation or involvement of any lab or company.

More ancient samples were added to GedMatch in the following months, and the ancient DNA comparison feature continues to be quite popular. No one ever thought much about it, but there is absolutely no reason that same technique couldn’t be used for other samples, and indeed, now it has.

Just 13 days before the arrest of DeAngelo, another homicide was solved by DNA sequencing. A murder victim, known as Buckskin Girl, found in 1981 was identified as Marcia Lenore King.

According to the non-profit Doe project, whole genome sequencing was performed, the file reduced to a format needed for GedMatch, and the file uploaded.

Again, there was no public outcry – possibly because a victim had been identified and not a criminal suspect, and because the event was not as widely publicized. However, it’s also possible that if the Buckskin Girl’s murderer left DNA evidence on the body, that sequencing could have identified both the victim and the murderer.

The identification of Buckskin Girl, however, did spur non-public debate within the leadership of the genetic genealogy field. Little did we know that the next case would follow dramatically in just two weeks.

GedMatch Matching

GedMatch is an open data base created in 2011 by two individuals in order to facilitate open sharing of autosomal matching between people, even if they tested at different companies.

Of the DNA testing companies, at that time, only 23andMe and Family Tree DNA provided centiMorgan information, recently joined by MyHeritage. Ancestry does not provide this information to their clients, so if an Ancestry client wants to see how they match other individuals in terms of actual chromosome locations and centiMorgans, they must transfer to either Family Tree DNA, GedMatch or now, MyHeritage.

Because GedMatch, with few exceptions during periods of change, matches customers from every vendor against customers from every other vendor, at least partially, they have become the clearing house for many people, especially Ancestry customers who don’t have the chromosome comparison option natively at Ancestry.

I want to be VERY clear about what you can and cannot see and do at GedMatch.

You can see your matches by the name they have entered, which can be an alias, along with their e-mail and how you match them. You CANNOT see the information of anyone you don’t match, unless you utilize another person’s kit number to see who they match. This has always been how GedMatch functions.

GedMatch users do NOT have access to your actual DNA file – ever. They can see who they match, and if they have your kit number, they can see who you match as well. Here’s an example of my own match screen.

Note – typically when showing GedMatch screen shots, I would blur the kit numbers and names in keeping with good privacy practices. However, since the point is to show you what one can actually see, I haven’t, because the top two matches are my own kits from Ancestry and 23andMe, and the third kit is that of my deceased mother whose kit I now manage. I also want to demonstrate that truly, there is nothing frightening or threatening about the information your matches see about you.

Best Matches

From a genealogist’s perspective, your “best matches” are to known close relatives, because when you match that relative and another person, especially on the same DNA segment, it’s a good indication that you share a common ancestor further back in time.

Genealogists build “clusters” of those types of matches in order to prove a relationship to a common ancestor. This is the heart and soul of DNA matching for genealogy.

For example, someone who matches you and your first cousin, both, on the same rather large segment assuredly shares a common ancestor with you and your cousin someplace in the past. The genealogical goal, of course, is to identify that long-deceased ancestor.

For example, if you match a first cousin, you know that your most recent common ancestor is one of your two sets of grandparents. Most genealogy matches are further back in time than either first or second cousins, making the identification of the common ancestor more challenging. Discovering that common ancestor is the goal of the game – because these matches to people with the same ancestor in their tree (generally) confirm that your ancestor is accurately identified. Some matches solve long-time family mysteries and break down brick walls.

However, not all brick walls are in the past.

Adoptee and Parental Search Matching

A few years ago, genealogists attempting to find unknown parents for adoptees and people with unknown fathers noticed that there were matching patterns to be followed successfully.

With millions of people having tested today, it’s much easier than it was a few years ago to find that key match (or matches) that reveals or confirms the identity of either an ancestor or an unknown parent.

While both genealogists and unknown parent searches look for close matches, the techniques diverge at that point.

Genealogists use a first or second cousin match to move backwards in time, looking for common distant ancestors.

In unknown parent searches, the same genealogical technique is used, EXCEPT, the person doing the searching could care less about older ancestors, such as great-grandparents. They are looking for their immediate ancestors – their parents.

Therefore, when an adoptee finds that critical first cousin match, they aren’t interested in figuring out a common ancestor for genealogy, meaning going backward in time. They covet that first cousin match for the purpose of coming forward in time, meaning towards the present in order to identify parents.

If you match to someone as a first cousin, you share a common set of grandparents. You can’t tell, without additional information, which set of grandparents, but given that you do match as a first cousin, there are only two positions the match can have in your family – either the pink or blue person above. This means that either your father or mother was a sibling to your first cousin’s parent.

You either share your father’s parents with your first cousin, or your mother’s parents, but you don’t know which – at least not yet.

With that much information, it’s fairly easy to uncover the rest. After all, you only have two sets of grandparents and anyone who is your first cousin will point to one of those two sets of grandparents.

You need to figure out who else matches you AND your first cousin, and then look at the genealogy of everyone who matches in that group until you discover the name of common family members/ancestors that you recognize, meaning an ancestor on either your maternal or paternal side to confirm that your first cousin matches you on that line.

Of course, for people who know their parents, figuring out first cousins is easy and takes about 2 seconds – but not so much for adoptees. Adoptees look to see how people who match them also match each other. For example, does the same couple or ancestor appear in the trees of multiple matches? In the example below, if the tester matches all three blue people as first cousins, the name of the blue cousins’ grandparents would be the same, suggesting that the tester’s grandparents were that same couple.

Next, it’s necessary to figure out which people who descend from the common set of grandparents might be candidates to be the parent the tester is seeking. In the example below, we’ve expanded the side of the three blue first cousin matches, adding their parents’ siblings as parent candidates for our tester. Factors such as age and location at the time of conception are taken into consideration when focusing on parent candidates.

If the tester doesn’t know who their parents are, they would be VERY interested in determining ALL of the children of the grandparents of their first cousin. Because one of the children of their first cousin’s grandparents IS THEIR PARENT.

In our example above, let’s just look at one of the grandparent pairs of the blue first cousins. The first cousins know who their grandparents are. The tester does not. In this case either the father or mother of the tester is the child of the first cousin’s grandfather and grandmother. Meaning that the red mother is the female child of the grandparents, or the green father is the male child of the grandparents.

We know that the grey parents of the first cousin matches can be eliminated as the tester’s parent. If the first cousin’s parent was also the parent of the tester, then the first cousin wouldn’t be a first cousin, but would be a full or half sibling.

However, the matching first cousins’ parents have three siblings who have not DNA tested, nor have their children, shown in pink and green. One of those three siblings IS either the father or mother of the tester. Of course, if the grandparents didn’t have any female children, then the tester’s father is one of the green male children of the grandparents, and vice versa.

In the example shown below, the tester’s mother IS the female child of the grandfather/grandmother pair and has been moved into place. This would be determined either by direct testing of the pink or green people, or their descendants, or by process of elimination through DNA tests of the other siblings or utilizing other pieces of information such as age and proximity.

Some adoptees are lucky enough to test and discover that a parent has tested and is waiting for them. Sometimes an unsuspected half sibling appears. Sometimes, there is no close match and the adoptee has to do more research work, including tracking people through social media and other means to find candidate family members to DNA test or to see if they know who might have been the much-sought-after parent.

Search Techniques

This type of research work has been taking place for years, individually, through groups like DNAadoption and DNADetectives who utilize volunteer search angels, as well as by several researchers who make a living doing this type of personal search. My focus is not on adoption search cases.

No one has seemed to consider this unethical, even though some of this work, especially when a parent isn’t immediately evident, involves utilizing the DNA of the tester’s matches and their matches’ relatives, connecting the family dots through social media, specifically Facebook pages, to discover the identify of someone who may not welcome that discovery. However, like GedMatch, Facebook, while not intended for this purpose is public and is heavily utilized by adoption searchers.

Some adoption search cases end very well – with heartfelt beautiful reunions welcomed by all parties. Others not so much, potentially upending the life of the biological parent that was established after the adoption took place which leads to a rejection that devastates the adoptee. Much of the damage can be done by the search process itself, meaning that the biological parent is “outed” by the process of people working through relatives who have tested and match in various ways. Of course, they ask questions to identify the biological parent – meaning that by the time the parent is identified they have no say about their own privacy.

Once DNA is uploaded to a data base, the search techniques for biological parent searches and to identify Buckskin Girl and DeAngelo, are exactly the same.

These searches all utilize matches to others, and the matches’ trees, to move forward in time to current to search for contemporary people, not ancestors further back in time.

Back to the Golden State Killer

Ok, back to the Golden State Killer.

We have the killer’s DNA sequence from the original crime scene and the file reduced to the number of DNA locations utilized by GedMatch.

Someone, presumably one of the investigators working on the case, uploaded that file to GedMatch, which appears to be entirely permissible because the police have legal custody of that DNA sample.

Let’s say the investigator, just like a genealogist, found a first cousin match, or even more distant (read difficult) matches further back – and they did exactly what people searching for unknown parents do. The investigator eventually worked through all of the possibilities based on common matches – then looked at age, location, opportunity and factors that might exclude some candidates. In this case, because it’s a rape case with the criminal obviously a male, females would be excluded, for example.

Evidence from DNA matches to the biological sample of the Golden State Killer caused the police to focus on DeAngelo.

After DeAngelo was identified through matches as a suspect, the police obtained his discarded DNA. Discarded DNA could be anything from a coffee cup thrown away to a cigarette butt or something from the trash.

That discarded DNA was sequenced, and a few days before his arrest, uploaded to GedMatch as well. The discarded DNA apparently matched the earlier sample from the killer as “himself” and the other people that the killer matched in the same way – establishing the fact that the Golden State Killer and DeAngelo were one and the same person.

You can see that I match my own 23andme and Ancestry kits as my closest matches in the GedMatch example I showed.

In essence, what the DNA of “the killer” obtained from the crime scene did was to generate leads through matching that allowed the police to identify DeAngelo and obtain a sample of his discarded DNA in order to verify that DeAngelo was the same person as the killer. Of course, he’s still a suspect today, not yet convicted.

Cooperation or Search Warrant

The police, in this case, didn’t need to ask for anyone’s cooperation. They already had the sample from the killer, they did what hundreds of thousands of others have done and simply uploaded the file to GedMatch.

The investigators didn’t need a search warrant because they weren’t asking for anything from GedMatch not already freely given, meaning matches to anyone who has already uploaded their information.

The investigators only used that matching information to generate tips for further investigation. They repeated the entire process with the discarded DNA sample to verify the earlier results obtained with DNA from the crime scene.

It bears noting here that if DeAngelo’s DNA had NOT matched that of the killer and the other people in the same way the killer’s DNA had matched them, then the discarded DNA would have eliminated DeAngelo as a suspect.

So, no genealogy testing company had to cooperate with anyone, nor was a search warrant necessary.

What’s the Rub?

We now have a monster about to be brought to justice. Two weeks earlier, Buckskin Girl, a murder victim, was identified and the family will finally have closure, 37 years later. Both of these are unquestionably wonderful outcomes.

So why are some people upset?

In some cases, people are simply confused about the process involved, and they will be relieved when they understand what actually happened – that their DNA was not “handed over” to anyone.

Some people have broader reaching concerns about privacy.

It appears that the word “police” combined with the word “criminal” caused a great deal of fear and trepidation, especially since a suspect was identified this time, not a victim and not someone’s biological parents.

Some people don’t want their DNA utilized to identify a family member, no matter what that person has done. And yes, that’s very nearly an exact quote from an e-mail I received.

Others are simply uncomfortable with their DNA being used in any kind of a potential criminal setting – even to identify a victim like Buckskin Girl.

One person says that it just makes her feel “creepy.” Oddly enough, that’s how I feel about Facebook now.

If you think it’s fine for adoptees to identify parents using these techniques, but you don’t think it’s alright for victims or criminals to be identified, I’d like to ask you to consider the following scenario.

A underage female is raped and becomes pregnant. She reports the rape to police at the time. She opts to have the child instead of having an abortion, and the child is placed for adoption. The rapist is never caught, and the young woman goes on to establish a new life and marry, not telling her husband or children born to the marriage about the rape, or the child placed for adoption. The expectation of the mother at that time was certainly that “no one would ever know,” whether those words were ever in an adoption contract or not. The fact that adoptions were (and still remain in many places) closed speaks to the expectations set for the mother.

Years pass, and today the adopted child, now an adult, tests. Both of the adoptee’s biological parents are identified through matches to relatives of the adoptee’s parents who have tested, such as first cousins in our earlier example. The adoptees parents themselves did not test.

Results were:

  • The life of the mother, a victim who did nothing wrong or illegal, and who chose to give the child life, is upended through the process of being identified.
  • The father who is a rapist, a criminal, is also identified.
  • The adoptee is subsequently very unhappy with both results for different reasons, but cannot press “undo.”

I’m NOT inferring that these data bases shouldn’t be used for identifying parents. I AM saying that we need to consider that the techniques for identifying parents, victims and criminals are the same. The outcomes are not always positive in parent searches AND these areas are or can be incredibly intertwined. Unraveling or prohibiting one effectively prohibits others. How do we treat everyone fairly and how are those rules, whatever they might be, enforced, and by whom?

In other words, how do we “do no harm”? After all, this started out to be genealogy, a fun hobby, and has now progressed gradually through a slow crawl to something else. Here we sit today.

Consent

In the example rape case above, neither the biological mother nor the father had tested, but their family members had – just like in the Buckskin Girl and the Golden State Killer cases.

Today, relative to the Golden State Killer, people are upset because the database, GedMatch, into which they uploaded their DNA file for genealogy was used for other purposes – specifically to apprehend the Golden State Killer. They feel that isn’t the purpose for which they uploaded their DNA.

Any one of us could have been one of the matches to the Golden State Killer and some people obviously were. It bears repeating here that no one’s DNA or results were “handed over,” and the only people affected in any way was someone that matched DeAngelo, and probably then only the closest matches. Many time people’s trees are utilized and their cousins never contact them, so it’s certainly possible that people who match DeAngelo have no idea still to this day.

The usage evolution for GedMatch from genealogy to other functions has been a slippery slope, although clearly no one realized at the time, when several years ago uploads began with modified ancient sample kits. Later, people began to use the GedMatch database (among others) to identify biological parents, then victims and now criminals.

Other people feel that searching for parents is genealogy, but identifying criminals is not – even though the search techniques are exactly the same. In our rape example, the mother who was a victim was identified and the criminal rapist father was identified as well by the same DNA test. The tester’s intent was only to reveal their biological parents – hoping for a loving, tear-filled reunion. That’s not what happened. The process of finding their parents also revealed the associated circumstances.

You can’t separate these usages into separate “boxes” anymore, because they overlap in unexpected says. That rape case wasn’t hypothetical.

I have absolutely no sympathy for the rapist, in fact, quite the opposite – but I feel incredibly bad for the young mother who has now been twice victimized. First by the rapist and second by the process used to track her, through relatives who began asking lots of difficult questions.

Last fall, in a Facebook group I follow, I was utterly horrified to see someone post that in the adoption cases she works, she encourages the adoptee, when they feel they are “close” to identifying a parent, to send registered letters to all of the family members, asking them to test, hoping that those who aren’t the parent quickly test to absolve themselves and as a way to flush the parent out.

It’s Not Just Your DNA

In either case, the DNA of the RELATIVES of the person being sought, be it a parent, a victim or a criminal, is what is used to find or identify the desired person. People who have uploaded to GedMatch are now concerned that they might be that relative whose DNA is used in a way they did not originally anticipate. They are right, and not just about this particular criminal case – but about the many types of usages other than strictly genealogical that looks backwards in time.

Perhaps the people who uploaded never thought about the fact that their DNA is/was being used for adoption or missing parent searches – or perhaps they are supportive of that activity. Maybe they thought that identifying victims, such as Buckskin Girl was a great use of the data base by investigators. Maybe they never thought about the fact that searching for criminals who leave DNA specimens behind uses exactly the same research and matching techniques as adoptees’ parent searched.  Perhaps no one stopped to think  that the same search can identify both parents, a victim and a criminal at the same time.

Maybe they were naïve and never thought about it at all or didn’t read the GedMatch statement that said (and says):

In today’s world, there are real dangers of identity theft, credit fraud, etc. We try to strike a balance between these conflicting realities and the need to share information with other users. In the end, if you require absolute privacy and security, we must ask that you do not upload your data to GEDmatch. If you already have it here, please delete it.

I can’t tell you how many of the posts and e-mails I’ve seen about this topic include the word “assume,” and we all know about assume, right?

Maybe, like me, some people have thought about that potential situation and want criminals, regardless of whether they are relatives or not off the streets. If they are relatives, so much the better, keeping my own family safer.

Some people may have been uploading their relatives’ DNA samples to GedMatch or any other site other than where the relative originally tested without the relative’s permission. If that’s the case, the person either needs to obtain permission, pronto, or delete the person’s DNA they uploaded without permission.

GedMatch’s Statement

GedMatch has posted the following statement.

Testing in the Future

Another concern voiced this week is that people, especially relatives that we want to test, will be much more reticent to test in the future if they think the police can “take” or “access” their DNA. That’s probably true, so we need to be prepared to explain what actually happened, and how, to eliminate misconceptions

However, it is true that DNA in these databases has been and is being used for things other than genealogy. This is also the purpose of informed consent – with an emphasis on informed. Bottom line – the cat’s out of the bag now. Perhaps these incidents together, meaning parent searches, the identification of Buckskin Girl and the arrest of the Golden State Killer, will bring home the warning that was previously noted on GedMatch.

If you’re not comfortable – don’t upload. This also means that people MUST STOP simply telling other people to upload to GedMatch as a cure-all for everything that ails genealogists. If you are making the recommendation, you also bear the responsibility for full disclosure or at least a caveat statement.

“GedMatch is great for genealogy matching to each other across vendor platforms <or words of your choosing>. It’s also used for adoptees searching for their parents, was used to identify Buckskin Girl and played an important role in the apprehension of the Golden State Killer.”

As a result, GedMatch now provides a way to remove your entire account, if you so wish. GedMatch needed to do that for GDPR anyway. As long as we are on the topic, GDPR, which goes into effect on May 25th tightens privacy significantly for any vendor or company that includes records of any UK/EU resident. You can read about that in my articles here and here.

Every (major) testing company, along with GedMatch provides the option of removing your DNA results if you are so inclined.

As for people being hesitant to test, certainly some already were and some will be. But there will also be others that only first heard about genetic genealogy this past week and this notoriety won’t deter them one bit. Some people will actively choose to participate, knowing that they can later change their mind if they so choose. I notice the GedMatch site has been busier than ever.

In summary, the police did not “take” or even ask for anyone’s DNA. They simply uploaded the DNA results of a criminal, taken from the crime scene, and looked at the matches generated in order to make an ID, at which time they obtained the DNA of the suspect which matched the DNA from the crime scene.

Just like genetic genealogy, DNA without supporting evidence won’t be much good, but now they have someone identified to work with, collecting other evidence. Where was he? Does the DNA at multiple scenes match his? I would think in terms of a prosecution that these matches and arrest is only the beginning, not the end of the process.

Given that none of the major genealogy companies cooperate with law enforcement without a search warrant, it’s a WHOLE LOT easier to obtain your discarded DNA than to obtain a search warrant. Furthermore, there is no chain of custody with DNA from a genealogy data base, but there certainly is from a rape and from a discarded cup. If the DNA of the criminal from the scene, and the suspect’s DNA from a discarded item match as the same person, that’s pretty conclusive and damning evidence.

Of course, fear begets fear and the old questions of government access and other issues bubble up again.

Another question I’ve received is about whether the usage of GedMatch for the Golden State Killer case opens the door for DNA to be obtained by insurance companies. First, you’d have to test and upload something. There is nothing to “get” if you don’t – and the insurance company would need a search warrant (and probable cause of a crime) to retrieve your DNA from any testing company.

GINA legislation protects American’s today from discrimination when obtaining health insurance, but it doesn’t extend to life and other types of insurance. However, when I applied for life insurance some years ago, they took a blood sample and if I wanted life insurance, I had to authorize whatever it was they wanted to test in that sample. I’d wager that today, they would run a DNA test in addition to checking for other health indicators. No GedMatch or testing company is needed or desired – in fact – an insurance company requires chain of custody which is why they send someone to your house to draw your blood.

What To Do?

What you do with your DNA sample is entirely up to you. Everyone will make their own decision based on their own circumstances and preferences.

Some people have removed their DNA from the various databases and in essence, have stopped participating in genetic genealogy.

Some have made their kits at GedMatch either research or private. Research means that you can run the kit and see matches, but others can’t see you. That certainly defeats the spirit of collaborative genealogy.

Some people have evaluated the evidence at hand and have made the decision to continue as normal – just more aware of other uses that can, have and may occur.

This story and others similar will continue to arise and unravel, and many questions will likely be asked and hotly debated over the next many months and years, both within and outside of this community. I would not be surprised to see legislation of some type follow – which has been one of the biggest fears within the genetic genealogy community for years. Legislation by people unfamiliar with the topic at hand will likely be overreaching and extremely restrictive. Let’s hope I’m wrong.

Like many others, I’m concerned that the genetic genealogy field will become a victim of its own success. I hope that doesn’t happen, but at this point, the cow has left the barn and that door really can’t be effectively shut. All we can do is to be transparent, make informed choices, assure that we have the consent of anyone whose kit we manage and to advocate for sanity.

My Decision

I’ve made my personal decision and my thought process worked like this:

  1. I haven’t done anything that I need to worry about.
  2. If a family member does something they need to be arrested for, I hope my DNA helps.
  3. If I were the family of the victims, I would want them identified AND their murderer/rapist put away forever. (Disclosure, I have had a family member raped and a different family member murdered.)
  4. As a citizen, I want criminals such as rapists and murderers identified and removed from society through any legal means possible.
  5. DNA testing also exonerates people who were wrongfully convicted through advocacy groups like the Innocence Project.
  6. DNA eliminates potential criminal candidates as well as pointing the finger directly at others.
  7. Using the techniques utilized for unknown parent searches, an identification is seldom made as a result of ONE match only, unless it’s immediate family. Therefore, if you remove your own DNA from the data base(s) for matching, your cousin and their cousins are still there – so your criminal family member’s goose is still cooked. It might just take a little longer in the stew pot.

My DNA stays online and I continue to support all of the major DNA testing companies that provide matching and accept transfers, including GedMatch.

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Disclosure

I receive a small contribution when you click on some of the links to vendors in my articles. This does NOT increase the price you pay but helps me to keep the lights on and this informational blog free for everyone. Please click on the links in the articles or to the vendors below if you are purchasing products or DNA testing.

Thank you so much.

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Beware The Sale of Your DNA – Just Because You Can Upload Doesn’t Mean You Should

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You know something is coming of age when you begin to see knockoffs, opportunists – or ads on late night TV. As soon as someone figures out they can make money from something, rest assured, they will.

In the past few weeks, we’re beginning to see additional “opportunities” for places to upload your DNA files. Each of them has something to “give” you in return.  You can view this as genuine, or you can view this as bait – or maybe some of each.

So far, each of them also seems to have an agenda that is NOT serving us or our DNA – but serving only or primarily them. I’m not saying this is good or bad – that depends on your perspective – but I am saying that we need to be quite aware of a variety of factors before we participate or upload our autosomal DNA results.

Some sites are more straightforward than others.

I have already covered the fact that both 23andMe and Ancestry sell your DNA to whomever for whatever they see fit.

Truthfully, I always knew that 23andMe was focused on health, but I mistakenly presumed it was on the study of diseases like Parkinson’s. My mother was diagnosed with Parkinson’s, so I had a personal stake in that game.  When their very first patent was for “designer babies,” I felt shell-shocked, stupid, naïve, duped and taken advantage of. I had willingly opted-in and contributed my information with the idea that I was contributing to Parkinson’s research, while in reality, my DNA may have been used in the designer baby patent research.  I have no way of knowing and I had no idea that’s the type of research they were doing.

Parkinson’s yes, designer babies no.  It’s a personal decision, but once your DNA is being utilized or sold, it can be used for anything and you have no control whatsoever.  While I was perfectly willing to participate in surveys and have my DNA utilized for a cure for diseases, in particular Parkinson’s, I was not and am not willing for my DNA to be utilized for things like designer babies so the wealthy can select blue eyed, blonde haired children carrying the genes most likely to allow them to become athletes or cheerleaders.

And once the DNA cat is out of the bag, so to speak, there is no putting it back in. In some cases, you can opt out of identified data, but you can’t opt out of what has already been used, and in many cases, you can’t opt out of having your anonymized data sold.

So, let me give you an example of just how much protection anonymizing your data will give you.

Anonymized Data

Let’s say that someone in one of those unknown firms wants to know who I am. All they have to do is drop my results into GedMatch and my name is right there, along with my e-mail.

Have a fake name at Gedmatch? Well, think for a minute of the adoption search groups and how they identify people, sometimes very quickly and easily by their matches.  Everyday.

Not to mention, my children (and my parents, were they living) are very clearly identifiable utilizing my DNA. So while my DNA is mine, and legally belongs to me, it’s not entirely ONLY mine.

The promise of anonymized data by stripping out your identifying information has become somewhat of a hollow promise today. In a recent example, a cholesterol study volunteer recognized “herself” in a published paper, but was not notified of the results. In an earlier paper, several Y DNA volunteers were identified as well. Ironically, Dr. Erlich, now having formed DNA.Land and soliciting DNA uploads was involved with this unmasking.

Knowing what I know today, I would NEVER have tested at 23andMe and I would have to think very long and hard about Ancestry. The hook that Ancestry has, of course, is all of those DNA plus matching trees.  Is having my anonymized DNA sold worth that?  I don’t really know.  For me, it’s too late for an Ancestry decision, because I’ve already tested there and you cannot opt out of having your anonymized data sold.

I already had an Ancestry subscription, but some testers don’t realize they have to have at least a minimum level subscription to receive all of the benefits of testing at Ancestry. That could certainly be a rude awakening – and unexpected when they purchased the test.  The $49 DNA base subscription is not available on Ancestry’s website either – you have to know about it and call support to purchase that level.  I’m sure most people simply purchase the normal subscription or do without.

One thing is for sure, our DNA is worth a lot of money to both research and Big Pharm, and apparently worth a lot of effort as well, given how many people are attempting to capture our DNA for sale.

In the past few weeks, there have been several new sites that have come online relative to autosomal DNA uploading and testing.

But before we talk about those, I’d like to take a moment for education.

The Sanger Survey

Sanger survey

I’d like to suggest that you take a few minutes to view the videos associated with the Sanger Institute DNA survey here. I think the videos do a good job of explaining at least some of the issues facing people about the usage of their DNA.  Of course, you have to take their survey to see the videos at each step – but it’s good food for thought and they do allow you to make comments.

So, please, take a few minutes for this survey before proceeding.

Genes and US

One of the first “sidebar” companies to appear in September 2014 was at the site   http://www.genesand.us/ which is now nonfunctional.

I took screen shots at that time, since I was going to write an article about what seemed quite interesting.

Genesandus

It was a free service that offered to “find the best genes that you can give to your child.” You had to test at 23andMe, then upload both you and your partner’s raw DNA files and they would provide you with results.

I did just that, and the screen shot below shows the partial results. There were several pages.

Genesandus1

At the end of this section was a question asking if I wanted to “speak to a doctor about any of these benefits.” I didn’t, but I did want to know if gene selection was actual possible and being implemented.  I found the site’s contact information.  I sent this e-mail, which was never answered.

genesandus2

So let me ask you…where is my and my husband’s DNA today? I uploaded it.  Who has it?  Was this just a ploy to obtain our DNA files?  And for what purpose?  Who were these people anyway?  They are gone without a trace today.

DNA.Land

More recently, in the fall of 2015, DNA.Land came upon the scene.

As of today, 22,000+ people have uploaded their autosomal DNA files.

dna.land

What does DNA.Land offer the genealogist?

A different organization’s view of your ethnicity as well as relative matching to others who upload.

The quality and reliability of these enticements offered by companies in exchange for our DNA files may vary widely. For example, when DNA.Land launched, their matching routine didn’t find immediate family members.  No product should ever be launched in an alpha state, which calls into question the quality of the rest of their products and research.  That matching problem has reportedly been fixed.

The second enticement they offer is an ethnicity tool.

I can’t show you my example, because I have not uploaded my DNA to DNA.Land.   However, a genetic genealogy colleague conducted an interesting experiment.

TL Dixon uploaded four DNA files in late April 2016. He tested twice at 23andMe, both tests being the v3 version, and twice at Ancestry, in 2012 and 2014, and uploaded all 4 files to DNA.Land to see what the results would be, comparatively.

TL 23andMe test 1

23andMe v3 test 1

TL 23andme test 2

23andMe v3 test 2

TL Ancestry test 1 2014

Ancestry test from 2014

TL Ancestry test 2 2012

Ancestry test from 2012

We all know that ethnicity testing as a whole is not terribly reliable, but is the most reliable on the continent level, meaning Africa vs Europe vs Asia vs Native American. Given that these raw data files are from the same testing companies, on the same chip platform, for the same person, the Ancestry 2012 and 2014 ethnicity results from DNA.Land are quite different from each other relative to African vs Eurasian DNA, and also from the 23andMe results – even at the continent level.  Said another way, both 23andme results and the Ancestry 2014 results are very similar, with the Ancestry 2012 test, shown last, being the outlier.

Thanks to TL Dixon for both his multiple testing and sharing his results. According to TL’s known family history, the two 23andMe and the Ancestry 2014 kits are closest to accurate.  Just as an aside, TL, surprised by the differing results, utilized David Pike’s utilities to compare the two Ancestry files to see if one had a problem, and they were both very similar, so the difference does not appear to be in the Ancestry kits themselves – so the difference has to be at DNA.Land.

So, what I’m saying is that DNA.Land’s enticement of a different company’s view of ethnicity, even after several months, and even at the continent level, still needs work. This along with the original matching issue calls into question the quality of some of the enticements that are being used to attract DNA donors.  We should consider this not only at this site, but at others that provide enticement or “free” services or goodies as well.  Uploaders beware!

While the non-profit status of DNA.Land along with their verbiage leads people to believe that their work is entirely charitable, it is not, as reflected in this sentence from their consent information.

I understand that the research in this study may lead to new products, research tools, or inventions that have financial value. By accepting the terms of this consent, I understand that I will not be able to share in the profits from future commercialization of products developed from this study.

At least they are transparent about this, assuming you actually read all of the information provided on the site – which you should do with every site.

My Heritage Adds DNA Matching

This past week, My Heritage, a company headquartered in Israel, announced that it has added autosomal DNA matching. Some people think this is great, and others not so much.

MyHeritage

My Heritage, like Ancestry, is a subscription site. I happen to already be a member, so I was initially pretty excited about this, especially when I saw this in their blog.

Your DNA data will be kept private and secure on MyHeritage.

Our service will then match you to other people who share DNA with you: your relatives through a common ancestor. You will be able to review your matches’ family trees (excluding living people), and filter your matches by common surnames or geographies to focus on more relevant matches.

And also:

Who has access to the DNA data?

Only you do. Nobody else can see it, and nobody can even know that it was uploaded. Only the uploader can see the data, and you can delete it at any time. Users who are matched with your DNA will not have access to your DNA or your email address, but will be able to get in touch with you via MyHeritage.

I was thinking this might be a great opportunity, perhaps similar to the Ancestry trees, although they don’t say anything about tree matching.

However, their Terms of Service are not available to view unless you pretend to start an upload of your DNA (thanks for this tip Ann Turner) and then the “Terms of Service” and “Consent Agreement” links become available to view. They should be available for everyone BEFORE you start your upload.

On the MyHeritage main site, you’ll see DNA matching at the top. I’m a member, so, if you’re not a member, your “main site” may look different.

MyHeritage1

Click on “learn more” on the DNA Matching tab.

MyHeritage2

Step two shows you two boxes saying you have read the DNA Terms of Use and Consent Agreement. Don’t just click through these – read them.  Not just at this vendor, at all vendors.

In the required DNA Terms of Use we find this in the 5th paragraph:

By submitting DNA Results to the Website, you grant MyHeritage a perpetual, royalty-free, world-wide, transferable license to use your DNA Results, and any DNA Results you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered.

And this in item 7:

c. We may transfer, lease, rent, sell, share and/or or otherwise distribute de-identified information to third parties for any purpose, including without limitation, internal business purposes. Whenever we transfer, lease, rent, sell, share and/or or otherwise distribute your information to third parties, this information will be aggregated and personal identifiers (such as names, birth dates, etc.) will be removed.

In the optional Informed Consent agreement, we find this:

The Project collects, preserves and analyzes genealogical lineage, historical records, surveys, genetic information, and other records (collectively, “Research Information“) provided by users in order to conduct research studies to better understand, among other things, human evolution and migration, population genetics, regional health issues, ethnographic diversity and boundaries, genealogy and the history of the human species. Researchers hope that the Project will be an invaluable tool for a wide range of scholars and researchers interested in genealogy, anthropology, evolution, languages, cultures, medicine, and other topics and that the Project may benefit future generations. Discoveries made as a result of the Project may be used in the study of genealogy, anthropology, population genetics, population health issues, cultures, trends (for example, to identify health risks or spread of certain diseases), and other related topics. If we or a third party wants to conduct a study (1) on topics unrelated to the Project, or (2) using Research Information beyond what is described in this Informed Consent, we will re-contact you to seek your specific approval. In addition, we may contact you to ask you to complete a questionnaire or to ask you if you are willing to be interviewed about the Project or other matters.

  1. What are the costs and will I receive compensation? MyHeritage will not charge participants any fees in order to be part of the Project. There will be no financial compensation paid to Project participants. The data you share with us for the Project may benefit researchers and others in the future. If any commercial product is developed as a result of the Project or its outcomes, there will be no financial benefit to you.

You can’t see the terms of use or consent agreement unless you are in the process of uploading your DNA and in addition, it appears that your DNA data is automatically available in anonymized fashion to third parties. The terms of service and informed consent data above does not seem to correlate with the marketing information which states that “nobody else” can see your data.

The other thing that’s NOT obvious, is that you don’t HAVE to click the box on the Consent Agreement, but you do HAVE to click the box on the DNA Terms of Use.

If you are not alright with the entirety of the DNA Terms of Use, which is required, do not upload your DNA file to My Heritage.  If you are not alright with the Consent Agreement, don’t click the box.  Judy Russel wrote an detailed article about the terms here.

Uploading your DNA to MyHeritage is free today, but may be a pay service later. It is unclear whether a subscription is required today, or will be in the future.  However, at one time one could upload a family tree of up to 250 people to MyHeritage for free through 23andMe.  Larger files were accepted, but were only free for a certain time period and now the person whose tree was larger than 250 people and who did not subscribe is locked out of their account.  They can’t delete their larger-than-250 person tree unless they purchase a subscription.  It’s unclear what the future holds for DNA uploads, trees and subscriptions as well.

I have not uploaded my DNA to MyHeritage either, based on 7c. It would appear that even if you don’t give consent for additional “research information” to be collected and provided, they can still sell your anonymized DNA.

WeGene

WeGene

Very recently, a new company, WeGene at http://www.wegene.com has begun DNA testing focused on the Chinese marketplace.

Their website it in Chinese, but Google translates it, at least nominally, as does Chrome.

WeGene1

WeGene2

It does not appear that WeGene does matching between their customers, or if they do, I’ve missed it in the translations.

You can, however, upload at least 23andMe files to WeGene. I can’t tell about Family Tree DNA and Ancestry files.  Unless you have direct and fairly recent Chinese ancestry, I don’t know what the benefit would be.

Their privacy and security, such as it is, is at this link, although obviously autotranslated. Some people seem to have found other verbiage as well.  Navigating their site, written in Chinese, is very difficult and the accuracy of the autotranslation is questionable, at best.

Their autosomal DNA file is obviously available for download, because GedMatch now accepts these files.

I am certainly not uploading my DNA to WeGene, for numerous reasons.

Vendor Summary

This vendor summary was more difficult to put together than I thought it would be – in part because I am not a new user at either Ancestry or 23andMe and obviously can’t see what a new user would see on any of my accounts. Furthermore, Ancestry in particular has several documents that refer back and forth to each other, and let’s just say they are written more for the legal mind than the typical consumer.

vendor summary

* – Both 23andMe and Ancestry appear to utilize all clients DNA for anonymized distribution, but not for identified distribution without an individual opt-in.

*1 – According to the 23andMe Privacy Policy, although you can opt in to the higher level of research testing where your identity is not removed, you cannot opt out of the anonymized level of DNA sharing/sale. Please review current 23andMe documentation before making a decision.

*2 – Can Opt in or Opt out.

*3 – Can opt out of non-anonymized sales, but not anonymized sales. Please verify utilizing the current Ancestry documents before making a decision.

*4 – DNA.land indicates that you can withdraw consent, but does not say anything about deleting your DNA file.

*5 – DNA.Land states in their consent agreement that they will not provide identified DNA information without first contacting you.

*6 – At 23andMe, deleting DNA from data base closes account.

*7 – Automatically opted in for anonymized sales/sharing, but must opt in for identified DNA sharing.

*8 – 23andMe has been and continues to experience significant difficulties and at this point are not considered a viable genetic genealogy option by many, or stated another way, they would be the last choice of the main three testing companies.

*9 – All legal action must be brought in Tel Aviv, Israel, individually, and not as a class action suit, according to item 9 in the DNA Terms of Use document.

*10 – Website in Chinese, information through an automated English translator, so the information provided here is necessarily incomplete and may not be entirely accurate.

Please note that any or all of these factors are subject to change over time and the vendors’ documents should be consulting and read thoroughly at the time any decision is being made.

Please note that at some vendors there are many different documents that cross-reference each other. They are confusing and should all be read before any decision is made.

And of course, some vendors’ websites aren’t even in English.

Points to Consider

While these companies are the ones that have come to the forefront in the past few months, there will assuredly be more as this industry develops. Here are a list of things for you to think about and points to consider that may help you make your decision about whether you want to either test or upload your autosomal DNA with any particular company.  After all, your autosomal DNA file does contain that obviously much-sought-after medical information.

First, always read every document on a vendor site that says anything like “Terms of Use,” “Security and Privacy” or “Terms of Service” or “Informed Consent.” Many times the fine print is spread throughout several documents that reference each other.  If their policy does not say specifically, do NOT assume.

Also be aware that the verbiage of most companies says they can change their rules of engagement at any time without notification.

Here are the questions you may want to consider as you read these documents.

  • Does the company or organization sell or share your data?
  • Is the data that is sold or shared anonymized or nonanonymized, understanding that really no one is truly anonymous anymore?
  • Who do they sell your data to?
  • For what purpose?
  • Do you have the opportunity to authorize your DNA’s involvement per study?
  • If you do not live in the same country as the company with whom you are doing business, what recourse do you have to enforce any agreement?
  • How do you feel about your DNA being in the hands of either organizations or companies you don’t know for purposes you don’t know?
  • Are you asked up front if you want to participate?
  • Can you opt out of your DNA being shared or sold entirely from the beginning?
  • Can you opt out of your DNA being shared or sold entirely at any time if you have initially opted in?
  • Do you receive the opportunity to opt in, or are you automatically opted in?
  • If you are automatically opted in, do you get the opportunity, right then, to opt out, or only if you happen to discover the situation? And if you can opt out immediately, are you only able to opt out of non-anonymized data or can you opt out entirely?
  • Is the company up front and transparent about what they are doing with your DNA or do you have to dig to unearth the truth?
  • If you already tested, and gave up rights, were you aware that you did so, and do you understand if or how you can rescind that inadvertent authorization?
  • Do you have to dig for the terms of service and are they as represented in the marketing literature?
  • Do you feel like you are giving truly informed consent and understand what can and will happened to your DNA, and what your options are if you change your mind, and how to exercise those options? Are you comfortable with those options and the approach of the company towards DNA sale as a whole? Were they forthright?
  • For companies like MyHeritage and Ancestry, are their other unknown “gotchas” like a subscription being required in addition to testing or uploading to obtain the full benefits of the test or upload?
  • What happens to your DNA if the company no longer exists or goes out of business? For two examples, look at the Sorenson and Ancestry Y and mtDNA DNA results. This is certainly not what any consumer or tester expected. Not to mention, I’m left wondering where my DNA submitted to genesandus is today.
  • Who owns the company?  What are their names?  Where can you find them?  What is the address of the company?  What does google have to say about the owners or management?  Linked-In?  Facebook?  If there is absolutely no history, that’s probably as damning as a bad history.  No one can exist today in a professional capacity and have no history.  Just saying.
  • Is the company acting in any way that would cause you not to trust them, their motives or agenda?  As my mother used to say, the best predictor of future behavior is past behavior.

Near and Dear to My Heart

I have family members who work in the medical field in various capacities. I also have family members who have or have had genetically heritable conditions and like everyone else, I would love to see those diseases cured.  My reticence to donate my DNA to whomever for whatever is not a result of being heartless.  It’s a function of wanting to be in control of who profits with/from my DNA and that of my family.

Let me share a personal story with you.

My brother died of cancer in 2012. He went for chemo treatments every two weeks, and before he could have his chemo treatment, he had to have bloodwork to assure that his system was able to handle the next dose of chemo.

If his white cell count was below a certain threshold, a shot of a drug called Neulasta was available to him to stimulate his body to increase the white blood cells. The shots were $8000 a piece.  And no, that is not a typo.  $8000!  His insurance did not cover the shots, because as far as they were concerned, he could just wait until his white cell numbers increased of their own accord and have the chemo then.  Of course, delaying the chemo decreased his chances of survival.

Over the course of his chemo, he had to have three of these $8000 shots. Fortunately, he did have the money to pay, although he did have to reschedule his appointment because he was required to bring a cashier’s check with the full payment in advance before the clinic would administer the shot.  After that, he simply carried an $8000 cashier’s check to each appointment, just in case.

I do not for one minute believe that those shots COST $8000 to manufacture, but I do believe that the pharmaceutical industry could, would and does CHARGE $8000 to desperate patients in order to continue the chemo that is their only hope of life. For those whose insurance pays, it’s entirely irrelevant. For those whose insurance does not pay, it’s a matter of life and death.  And yes, I’m equally as angry with the insurance company, but they aren’t the ones asking for me to do donate my DNA.

So, as for my DNA, no Big Pharm company will ever get their hands on it if there is ANYTHING I can do about it – although it’s probably too late now since I have tested with both 23andMe and Ancestry, who do not allow you to opt out entirely. I wish I had known before I tested.  At least I would have been giving informed consent, which was not the case.

Consequently, I want to know who is doing what with my DNA, so that I have the option of participating or not – and I want to know up front – and I don’t want it hidden in fine print with the company hoping I’ll just “click through” and never read the documentation. I don’t want it to be intentionally or unintentionally confusing, and I want unquestionable full disclosure – ahead of time.  Is that too much to ask?

My brother had the money for the shots, and he died anyway, but can you imagine being the family of someone who did not have $24,000?

And if you think for one minute that Big Pharm won’t do that, consider Turing Pharmaceuticals CEO Martin Shkreli, dubbed “the most hated man in America” in September 2015 for gouging patients dependent on a drug used for HIV and cancer treatment by raising the price from $13.50 per pill to $750 for the same pill, a 5,556% increase – because he could.

Medical research to cure disease I’m supportive of in terms of DNA donation, but not designer babies and not Big Pharm – and today there seems to be no way to separate the bad from the good or to determine who our DNA is being sold to for what purpose. Worse yet, some medical research is funded by Big Pharm, so it’s hard to determine which medical research is independent and which is not.

The companies selling our DNA and Big Pharm are the only people who stand to benefit financially from that arrangement – and they stand to benefit substantially from our contributions by encouraging us to “help science.” We’ll never know if a study our donated DNA was used for produced a new drug – and if it’s one we can’t afford, you can bet the pharmaceutical industry and manufacturers care not one whit that we were one of the people who donated our DNA so they could develop the drug we can’t afford.  If any industry should not be soliciting free DNA donations for research, Big Pharm is that industry with their jaw-dropping profits.

So, How Much is Our DNA Worth Anyway?

I don’t know, directly, but we can get some idea from the deal that 23andMe struck with pharmaceutical company Genentech, the US unit of Swiss drug company, Roche, in January 2015, as reported by Forbes.

Quoting now, directly from the Forbes article:

According to sources close to the deal, 23andMe is receiving an upfront payment from Genentech of $10 million, with further milestones of as much as $50 million. The deal is the first of ten 23andMe says it has signed with large pharmaceutical and biotech companies.

Such deals, which make use of the database created by customers who have bought 23andMe’s DNA test kits and donated their genetic and health data for research, could be a far more significant opportunity than 23andMe’s primary business of selling the DNA kits to consumers. Since it was founded in 2006, 23andMe has collected data from 800,000 customers and it sells its tests for $99 each. That means this single deal with one large drug company could generate almost as much revenue as doubling 23andMe’s customer base.

The article further says that the drug company was particularly interested in the 12,000 Parkinson’s patients and 1,300 of their parents and siblings who had provided family information. Ten million divided by 13,300 means Genentech were willing to pay $750 for each person’s DNA, out the door.  So the tester paid $99 or upwards, depending on when they tested – $1000 before September 2008 when the test dropped to $399, to 23andMe and then 23andMe made another $750 per kit from the tester’s donated DNA results.

And that’s before the additional $50 million and the other deals 23andMe and the other DNA-sellers have struck with Big Pharm. So yes indeed, our DNA is worth a lot.

It’s no wonder so many people are trying to trying to find a way to entice us to donate our results so they can sell them. In fact, it’s a wonder, and a testament to their integrity, that there is ANY company with access to our DNA results that isn’t selling them.  In fact, there are only two companies, plus the Genographic Project.

Who Doesn’t Share or Sell Your Autosomal DNA?

Of the major companies, organizations and sites, the only three, as best I can tell, that do not share or sell your autosomal DNA (or reserve the right to do so) and specifically state that they do not are National Geographic’s Genographic Project , Family Tree DNA and GedMatch.

Of those three, Family Tree DNA, a subsidiary of Gene by Gene is the only testing company and says the following:

Gene by Gene collects, processes, stores and shares your Personal Information in a responsible, transparent and secure environment that fosters our customers’ trust and confidence. To that end, Gene by Gene respects your privacy and will not sell or rent your Personal Information without your consent.

National Geographic utilizes Family Tree DNA for testing, and the worst thing I could find in their privacy policy is that they will share:

  • with other selected third parties so that they may send you promotional materials about goods and services that they offer. You have the opportunity to opt out of our sharing information about you as described below in the section entitled “Your Choices”;
  • in accordance with your consent.

Nothing problematic here.

Your Genographic DNA file is only uploadable to Family Tree DNA and Nat Geo does not accept uploaded data from other vendors.

GedMatch, which allows users to upload their raw data files from the major testing companies for comparison says the following:

It is our policy to never provide your genealogy, DNA information, or email address to 3rd parties, except as noted above.

Please refer to the entire documents from these organizations for details.

Serious genealogists have probably already uploaded to GedMatch and tested at or uploaded to Family Tree DNA as well, so people are unlikely to find new matches at new sites that aren’t already in one of these two places.

To Be Clear

I just want to make sure there is no confusion about which type of companies we’ve been referencing, and who is excluded, and why. The only companies or organizations this article applies to are those who have access to your raw data autosomal DNA file.  Those would be either the companies who test your autosomal DNA (National Geographic, Family Tree DNA, Ancestry and 23andMe in the US and WeGenes in China), or if you download your raw data file from those companies and upload it to another company, organization or location, as discussed in this article.  The companies and organizations discussed may not be the only firms or organizations to which you can upload your autosomal DNA file today, and assuredly, there will be more in the future.

The line in the sand is that autosomal DNA file. Not your Y DNA, not your mitochondrial DNA, not your match list – just that raw data file – that’s what contains your DNA information that the medical and pharmaceutical industry seeks and is willing to pay handsomely to obtain.

There are other companies and organizations that offer helpful tools for autosomal DNA analysis and tree integration, but you do NOT upload your raw data file to those sites. Those sites would include sites like www.dnagedcom.com and www.wikitree.com. I want to be sure no one confuses sites that do NOT upload or solicit the upload of your raw autosomal DNA files with those that do.  I have not discussed these sites that do not upload your autosomal DNA files because they are not relevant to this discussion.

This article does not pertain to sites that do not utilize or have access to your autosomal raw data file – only those that do.

Summary

As the number of DNA testing consumers rises, the number of potential targets for DNA sales into the medical/pharmaceutical field rises equally, as does the number of targets for scammers.

Along with that, I increasingly feel like my ancestors and the data available through my DNA about my ancestors, specifically ethnicity since everyone seems to be looking for a better answer, is being used as bait to obtain my DNA for companies with a hidden, or less than obvious, agenda – that being to obtain my DNA for subsequent sale.

I greatly appreciate the Genographic Project, Family Tree DNA and GedMatch, the organizations who either test or accept autosomal file uploads do not sell my DNA, and I hope that they are not forced into that position economically in order to survive. It’s quite obvious that there is significant money to be made from the sale of massive amounts of DNA to the medical and pharmaceutical communities.  They alone have resisted that temptation and stayed true to the cause of the study of indigenous cultures and population genetics in the case of Nat Geo, and genetic genealogy, and only genetic genealogy in the case of Family Tree DNA and GedMatch.

In other words, just because you can doesn’t mean you should.

Frankly, I believe selling our data is fundamentally wrong unless that information is abundantly clear, as in truly informed consent as defined by the Office for Human Research Protections, in advance of purchasing (or uploading) the test, and not simply a required “click through box” that says you read something. I would be much more likely to participate in anything that was straightforward rather than something that was hidden or not straightforward, like perhaps the company or organization was hoping we wouldn’t notice, or we would automatically click the box without reading further, thinking we have no other option.

The notice needs to say something on the order of, “I understand that my DNA is going to be sold, may be used for profit making ventures, and I cannot opt out if I order this DNA test,” if that is the case. That is truly informed consent – not a check box that says “I have read the Consent Document.”

Yes, the companies that sell DNA testing and our DNA results would probably receive far fewer orders, but those who would order would be truly informed and giving informed consent. Today, in the large majority of cases, I don’t believe that’s happening.

We need to be aware as consumers and make informed decisions. I’m not telling you whether you should or should not utilize these various companies and sites, or whether you should or should not participate in contributing your DNA to research, or at which level, if at all. That is a personal decision we all have to make.

But I will tell you that I think you need to educate yourself and be aware of these trends and issues in the industry so you can make a truly informed decision each and every time you consider sharing your DNA. And you should know that in some cases, your DNA is being sold and there is absolutely nothing you can do about if it you utilize the services of that company.

Above all, read all of the fine print.

Let me say that again, channeling my best Judy Russell voice.

ALWAYS, READ ALL OF THE FINE PRINT!!!

ALWAYS.
READ.
ALL.
OF.
THE.
FINE.
PRINT.

Unfortunately, things are not always as they seem on the surface.

If you see a click-through box, a red neon danger light should now start flashing in your brain and refuse to allow you to click on that box until you’ve done what? Read all the fine print.

There really is no such thing as a free lunch – so be judiciously suspicious.

I will leave you with the same thought relative to testing companies and upload opportunities that I said about companies selling our data. Just because you can doesn’t mean you should.

I think early in this game we all got excited and presumed the best about the motives of companies and organizations, like I did with both 23andMe and genesandus, but now we know better – and that there may be more to the story than initially meets the eye.

And besides that, we all know that presume is the first cousin to assume…and well, we all know where this is going.  And by the way, that’s exactly how I feel about genesandus who disappeared with my and my husband’s DNA.  I wasn’t nearly suspicious or judicious enough then…but I am now.

______________________________________________________________

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The Best and Worst of 2015 – Genetic Genealogy Year in Review

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2015 Best and Worst

For the past three years I’ve written a year-in-review article. You can see just how much the landscape has changed in the 2012, 2013 and 2014 versions.

This year, I’ve added a few specific “award” categories for people or firms that I feel need to be specially recognized as outstanding in one direction or the other.

In past years, some news items, announcements and innovations turned out to be very important like the Genographic Project and GedMatch, and others, well, not so much. Who among us has tested their full genome today, for example, or even their exome?  And would you do with that information if you did?

And then there are the deaths, like the Sorenson database and Ancestry’s own Y and mitochondrial data base. I still shudder to think how much we’ve lost at the corporate hands of Ancestry.

In past years, there have often been big new announcements facilitated by new technology. In many ways, the big fish have been caught in a technology sense.  Those big fish are autosomal DNA and the Big Y types of tests.  Both of these have created an avalanche of data and we, personally and as a community, are still trying to sort through what all of this means genealogically and how to best utilize the information.  Now we need tools.

This is probably illustrated most aptly by the expansion of the Y tree.

The SNP Tsunami Growing Pains Continue

2015 snp tsunami

Going from 800+ SNPs in 2012 to more than 35,000 SNPs today has introduced its own set of problems. First, there are multiple trees in existence, completely or partially maintained by different organizations for different purposes.  Needless to say, these trees are not in sync with each other.  The criteria for adding a SNP to the tree is decided by the owner or steward of that tree, and there is no agreement as to the definition of a valid SNP or how many instances of that SNP need to be in existence to be added to the tree.

This angst has been taking place for the most part outside of the public view, but it exists just the same.

For example, 23andMe still uses the old haplogroup names like R1b which have not been used in years elsewhere. Family Tree DNA is catching up with updating their tree, working with haplogroup administrators to be sure only high quality, proven SNPs are added to branches.  ISOGG maintains another tree (one branch shown above) that’s publicly available, utilizing volunteers per haplogroup and sometimes per subgroup.  Other individuals and organizations maintain other trees, or branches of trees, some very accurate and some adding a new “branch” with as little as one result.

The good news is that this will shake itself out. Personally, I’m voting for the more conservative approach for public reference trees to avoid “pollution” and a lot of shifting and changing downstream when it’s discovered that the single instance of a SNP is either invalid or in a different branch location.  However, you have to start with an experimental or speculative tree before you can prove that a SNP is where it belongs or needs to be moved, so each of the trees has its own purpose.

The full trees I utilize are the Family Tree DNA tree, available for customers, the ISOGG tree and Ray Banks’ tree which includes locations where the SNPs are found when the geographic location is localized. Within haplogroup projects, I tend to use a speculative tree assembled by the administrators, if one is available.  The haplogroup admins generally know more about their haplogroup or branch than anyone else.

The bad news is that this situation hasn’t shaken itself out yet, and due to the magnitude of the elephant at hand, I don’t think it will anytime soon. As this shuffling and shaking occurs, we learn more about where the SNPs are found today in the world, where they aren’t found, which SNPs are “family” or “clan” SNPs and the timeframes in which they were born.

In other words, this is a learning process for all involved – albeit a slow and frustrating one. However, we are making progress and the tree becomes more robust and accurate every year.

We may be having growing pains, but growing pains aren’t necessarily a bad thing and are necessary for growth.

Thank you to the hundreds of volunteers who work on these trees, and in particular, to Alice Fairhurst who has spearheaded the ISOGG tree for the past nine years. Alice retired from that volunteer position this year and is shown below after receiving two much-deserved awards for her service at the Family Tree DNA Conference in November.

2015 ftdna fairhurst 2

Best Innovative Use of Integrated Data

2015 smileDr. Maurice Gleeson receives an award this year for the best genealogical use of integrated types of data. He has utilized just about every tool he can find to wring as much information as possible out of Y DNA results.  Not only that, but he has taken great pains to share that information with us in presentations in the US and overseas, and by creating a video, noted in the article below.  Thanks so much Maurice.

Making Sense of Y Data

Estes pedigree

The advent of massive amounts of Y DNA data has been both wonderful and perplexing. We as genetic genealogists want to know as much about our family as possible, including what the combination of STR and SNP markers means to us.  In other words, we don’t want two separate “test results” but a genealogical marriage of the two.

I took a look at this from the perspective of the Estes DNA project. Of course, everyone else will view those results through the lens of their own surname or haplogroup project.

Estes Big Y DNA Results
http://dna-explained.com/2015/03/26/estes-big-y-dna-results/

At the Family Tree DNA Conference in November, James Irvine and Maurice Gleeson both presented sessions on utilizing a combination of STR and SNP data and various tools in analyzing their individual projects.

Maurice’s presentation was titled “Combining SNPs, STRs and Genealogy to build a Surname Origins Tree.”
http://www.slideshare.net/FamilyTreeDNA/building-a-mutation-history-tree

Maurice created a wonderful video that includes a lot of information about working with Y DNA results. I would consider this one of the very best Y DNA presentations I’ve ever seen, and thanks to Maurice, it’s available as a video here:
https://www.youtube.com/watch?v=rvyHY4R6DwE&feature=youtu.be

You can view more of Maurice’s work at:
http://gleesondna.blogspot.com/2015/08/genetic-distance-genetic-families.html

James Irvine’s presentation was titled “Surname Projects – Some Fresh Ideas.” http://www.slideshare.net/FamilyTreeDNA/y-dna-surname-projects-some-fresh-ideas

Another excellent presentation discussing Y DNA results was “YDNA maps Scandinavian Family Trees from Medieval Times and the Viking Age” by Peter Sjolund.
http://www.slideshare.net/FamilyTreeDNA/ydna-maps-scandinavian-family-trees-from-medieval-times-and-the-viking-age

Peter’s session at the genealogy conference in Sweden this year was packed. This photo, compliments of Katherine Borges, shows the room and the level of interest in Y-DNA and the messages it holds for genetic genealogists.

sweden 2015

This type of work is the wave of the future, although hopefully it won’t be so manually intensive. However, the process of discovery is by definition laborious.  From this early work will one day emerge reproducible methodologies, the fruits of which we will all enjoy.

Haplogroup Definitions and Discoveries Continue

A4 mutations

Often, haplogroup work flies under the radar today and gets dwarfed by some of the larger citizen science projects, but this work is fundamentally important. In 2015, we made discoveries about haplogroups A4 and C, for example.

Haplogroup A4 Unpeeled – European, Jewish, Asian and Native American
http://dna-explained.com/2015/03/05/haplogroup-a4-unpeeled-european-jewish-asian-and-native-american/

New Haplogroup C Native American Subgroups
http://dna-explained.com/2015/03/11/new-haplogroup-c-native-american-subgroups/

Native American Haplogroup C Update – Progress
http://dna-explained.com/2015/08/25/native-american-haplogroup-c-update-progress/

These aren’t the only discoveries, by any stretch of the imagination. For example, Mike Wadna, administrator for the Haplogroup R1b Project reports that there are now over 1500 SNPs on the R1b tree at Family Tree DNA – which is just about twice as many as were known in total for the entire Y tree in 2012 before the Genographic project was introduced.

The new Y DNA SNP Packs being introduced by Family Tree DNA which test more than 100 SNPs for about $100 will go a very long way in helping participants obtain haplogroup assignments further down the tree without doing the significantly more expensive Big Y test. For example, the R1b-DF49XM222 SNP Pack tests 157 SNPs for $109.  Of course, if you want to discover your own private line of SNPs, you’ll have to take the Big Y.  SNP Packs can only test what is already known and the Big Y is a test of discovery.

                       Best Blog2015 smile

Jim Bartlett, hands down, receives this award for his new and wonderful blog, Segmentology.

                             Making Sense of Autosomal DNA

segmentology

Our autosomal DNA results provide us with matches at each of the vendors and at GedMatch, but what do we DO with all those matches and how to we utilize the genetic match information? How to we translate those matches into ancestral information.  And once we’ve assigned a common ancestor to a match with an individual, how does that match affect other matches on that same segment?

2015 has been the year of sorting through the pieces and defining terms like IBS (identical by state, which covers both identical by population and identical by chance) and IBD (identical by descent). There has been a lot written this year.

Jim Bartlett, a long-time autosomal researcher has introduced his new blog, Segmentology, to discuss his journey through mapping ancestors to his DNA segments. To the best of my knowledge, Jim has mapped more of his chromosomes than any other researcher, more than 80% to specific ancestors – and all of us can leverage Jim’s lessons learned.

Segmentology.org by Jim Bartlett
http://dna-explained.com/2015/05/12/segmentology-org-by-jim-bartlett/

When you visit Jim’s site, please take a look at all of his articles. He and I and others may differ slightly in the details our approach, but the basics are the same and his examples are wonderful.

Autosomal DNA Testing – What Now?
http://dna-explained.com/2015/08/07/autosomal-dna-testing-101-what-now/

Autosomal DNA Testing 101 – Tips and Tricks for Contact Success
http://dna-explained.com/2015/08/11/autosomal-dna-testing-101-tips-and-tricks-for-contact-success/

How Phasing Works and Determining IBS vs IBD Matches
http://dna-explained.com/2015/01/02/how-phasing-works-and-determining-ibd-versus-ibs-matches/

Just One Cousin
http://dna-explained.com/2015/01/11/just-one-cousin/

Demystifying Autosomal DNA Matching
http://dna-explained.com/2015/01/17/demystifying-autosomal-dna-matching/

A Study Using Small Segment Matching
http://dna-explained.com/2015/01/21/a-study-utilizing-small-segment-matching/

Finally, A How-To Class for Working with Autosomal Results
http://dna-explained.com/2015/02/10/finally-a-how-to-class-for-working-with-autosomal-dna-results/

Parent-Child Non-Matching Autosomal DNA Segments
http://dna-explained.com/2015/05/14/parent-child-non-matching-autosomal-dna-segments/

A Match List Does Not an Ancestor Make
http://dna-explained.com/2015/05/19/a-match-list-does-not-an-ancestor-make/

4 Generation Inheritance Study
http://dna-explained.com/2015/08/23/4-generation-inheritance-study/

Phasing Yourself
http://dna-explained.com/2015/08/27/phasing-yourself/

Autosomal DNA Matching Confidence Spectrum
http://dna-explained.com/2015/09/25/autosomal-dna-matching-confidence-spectrum/

Earlier in the year, there was a lot of discussion and dissention about the definition of and use of small segments. I utilize them, carefully, generally in conjunction with larger segments.  Others don’t.  Here’s my advice.  Don’t get yourself hung up on this.  You probably won’t need or use small segments until you get done with the larger segments, meaning low-hanging fruit, or unless you are doing a very specific research project.  By the time you get to that point, you’ll understand this topic and you’ll realize that the various researchers agree about far more than they disagree, and you can make your own decision based on your individual circumstances. If you’re entirely endogamous, small segments may just make you crazy.  However, if you’re chasing a colonial American ancestor, then you may need those small segments to identify or confirm that ancestor.

It is unfortunate, however, that all of the relevant articles are not represented in the ISOGG wiki, allowing people to fully educate themselves. Hopefully this can be updated shortly with the additional articles, listed above and from Jim Bartlett’s blog, published during this past year.

Recreating the Dead

James Crumley overlapping segments

James and Catherne Crumley segments above, compliments of Kitty Cooper’s tools

As we learn more about how to use autosomal DNA, we have begun to reconstruct our ancestors from the DNA of their descendants. Not as in cloning, but as in attributing DNA found in multiple descendants that originate from a common ancestor, or ancestral couple.  The first foray into this arena was GedMatch with their Lazarus tool.

Lazarus – Putting Humpty Dumpty Back Together Again
http://dna-explained.com/2015/01/14/lazarus-putting-humpty-dumpty-back-together-again/

I have taken a bit of a different proof approach wherein I recreated an ancestor, James Crumley, born in 1712 from the matching DNA of roughly 30 of his descendants.
http://www.slideshare.net/FamilyTreeDNA/roberta-estes-crumley-y-dna

I did the same thing, on an experimental smaller scale about a year ago with my ancestor, Henry Bolton.
http://dna-explained.com/2014/11/10/henry-bolton-c1759-1846-kidnapped-revolutionary-war-veteran-52-ancestors-45/

This is the way of the future in genetic genealogy, and I’ll be writing more about the Crumley project and the reconstruction of James Crumley in 2016.

                         Lump Of Coal Award(s)2015 frown

This category is a “special category” that is exactly what you think it is. Yep, this is the award no one wants.  We have a tie for the Lump of Coal Award this year between Ancestry and 23andMe.

               Ancestry Becomes the J.R. Ewing of the Genealogy World

2015 Larry Hagman

Attribution : © Glenn Francis, http://www.PacificProDigital.com

Some of you may remember J.R. Ewing on the television show called Dallas that ran from 1978 through 1991. J.R. Ewing, a greedy and unethical oil tycoon was one of the main characters.  The series was utterly mesmerizing, and literally everyone tuned in.  We all, and I mean universally, hated J.R. Ewing for what he unfeelingly and selfishly did to his family and others.  Finally, in a cliffhanger end of the season episode, someone shot J.R. Ewing.  OMG!!!  We didn’t know who.  We didn’t know if J.R. lived or died.  Speculation was rampant.  “Who shot JR?” was the theme on t-shirts everyplace that summer.  J.R. Ewing, over time, became the man all of America loved to hate.

Ancestry has become the J.R. Ewing of the genealogy world for the same reasons.

In essence, in the genetic genealogy world, Ancestry introduced a substandard DNA product, which remains substandard years later with no chromosome browser or comparison tools that we need….and they have the unmitigated audacity to try to convince us we really don’t need those tools anyway. Kind of like trying to convince someone with a car that they don’t need tires.

Worse, yet, they’ve introduced “better” tools (New Ancestor Discoveries), as in tools that were going to be better than a chromosome browser.  New Ancestor Discoveries “gives us” ancestors that aren’t ours. Sadly, there are many genealogists being led down the wrong path with no compass available.

Ancestry’s history of corporate stewardship is abysmal and continues with the obsolescence of various products and services including the Sorenson DNA database, their own Y and mtDNA database, MyFamily and most recently, Family Tree Maker. While the Family Tree Maker announcement has been met with great gnashing of teeth and angst among their customers, there are other software programs available.  Ancestry’s choices to obsolete the DNA data bases is irrecoverable and a huge loss to the genetic genealogy community.  That information is lost forever and not available elsewhere – a priceless, irreplaceable international treasure intentionally trashed.

If Ancestry had not bought up nearly all of the competing resources, people would be cancelling their subscriptions in droves to use another company – any other company. But there really is no one else anymore.  Ancestry knows this, so they have become the J.R. Ewing of the genealogy world – uncaring about the effects of their decisions on their customers or the community as a whole.  It’s hard for me to believe they have knowingly created such wholesale animosity within their own customer base.  I think having a job as a customer service rep at Ancestry would be an extremely undesirable job right now.  Many customers are furious and Ancestry has managed to upset pretty much everyone one way or another in 2015.

AncestryDNA Has Now Thoroughly Lost Its Mind
https://digginupgraves.wordpress.com/2015/04/02/ancestrydna-has-now-thoroughly-lost-its-mind/

Kenny, Kenny, Kenny
https://digginupgraves.wordpress.com/2015/04/10/kenny-kenny-kenny/

Dear Kenny – Any Suggestions for our New Ancestor Discoveries?
https://digginupgraves.wordpress.com/2015/04/13/dear-kenny-any-suggestions-for-our-new-ancestor-discoveries/

RIP Sorenson – A Crushing Loss
http://dna-explained.com/2015/05/15/rip-sorenson-a-crushing-loss/

Of Babies and Bathwater
http://www.legalgenealogist.com/blog/2015/05/17/of-babies-and-bathwater/

Facts Matter
http://legalgenealogist.com/blog/2015/05/03/facts-matter/

Getting the Most Out of AncestryDNA
http://dna-explained.com/2015/02/02/getting-the-most-out-of-ancestrydna/

Ancestry Gave Me a New DNA Ancestor and It’s Wrong
http://dna-explained.com/2015/04/03/ancestry-gave-me-a-new-dna-ancestor-and-its-wrong/

Testing Ancestry’s Amazing New Ancestor DNA Claim
http://dna-explained.com/2015/04/07/testing-ancestrys-amazing-new-ancestor-dna-claim/

Dissecting AncestryDNA Circles and New Ancestors
http://dna-explained.com/2015/04/09/dissecting-ancestrydna-circles-and-new-ancestors/

Squaring the Circle
http://legalgenealogist.com/blog/2015/03/29/squaring-the-circle/

Still Waiting for the Holy Grail
http://legalgenealogist.com/blog/2015/04/05/still-waiting-for-the-holy-grail/

A Dozen Ancestors That Aren’t aka Bad NADs
http://dna-explained.com/2015/04/14/a-dozen-ancestors-that-arent-aka-bad-nads/

The Logic and Birth of a Bad NAD (New Ancestor Discovery)
http://dna-explained.com/2015/08/12/the-logic-and-birth-of-a-bad-nad-new-ancestor-discovery/

Circling the Shews
http://legalgenealogist.com/blog/2015/05/24/circling-the-shews/

Naughty Bad NADs Sneak Home Under Cover of Darkness
http://dna-explained.com/2015/08/24/naughty-bad-nads-sneak-home-under-cover-of-darkness/

Ancestry Shared Matches Combined with New Ancestor Discoveries
http://dna-explained.com/2015/08/28/ancestry-shared-matches-combined-with-new-ancestor-discoveries/

Ancestry Shakey Leaf Disappearing Matches: Now You See Them – Now You Don’t
http://dna-explained.com/2015/09/24/ancestry-shakey-leaf-disappearing-matches-now-you-see-them-now-you-dont/

Ancestry’s New Amount of Shared DNA – What Does It Really Mean?
http://dna-explained.com/2015/11/06/ancestrys-new-amount-of-shared-dna-what-does-it-really-mean/

The Winds of Change
http://legalgenealogist.com/blog/2015/11/08/the-winds-of-change/

Confusion – Family Tree Maker, Family Tree DNA and Ancestry.com
http://dna-explained.com/2015/12/13/confusion-family-tree-maker-family-tree-dna-and-ancestry-com/

DNA: good news, bad news
http://legalgenealogist.com/blog/2015/01/11/dna-good-news-bad-news/

Check out the Alternatives
http://legalgenealogist.com/blog/2015/12/09/check-out-the-alternatives/

GeneAwards 2015
http://www.tamurajones.net/GeneAwards2015.xhtml

23andMe Betrays Genealogists

2015 broken heart

In October, 23andMe announced that it has reached an agreement with the FDA about reporting some health information such as carrier status and traits to their clients. As a part of or perhaps as a result of that agreement, 23andMe is dramatically changing the user experience.

In some aspects, the process will be simplified for genealogists with a universal opt-in. However, other functions are being removed and the price has doubled.  New advertising says little or nothing about genealogy and is entirely medically focused.  That combined with the move of the trees offsite to MyHeritage seems to signal that 23andMe has lost any commitment they had to the genetic genealogy community, effectively abandoning the group entirely that pulled their collective bacon out of the fire. This is somehow greatly ironic in light of the fact that it was the genetic genealogy community through their testing recommendations that kept 23andMe in business for the two years, from November of 2013 through October of 2015 when the FDA had the health portion of their testing shut down.  This is a mighty fine thank you.

As a result of the changes at 23andMe relative to genealogy, the genetic genealogy community has largely withdrawn their support and recommendations to test at 23andMe in favor of Ancestry and Family Tree DNA.

Kelly Wheaton, writing on the Facebook ISOGG group along with other places has very succinctly summed up the situation:
https://www.facebook.com/groups/isogg/permalink/10153873250057922/

You can also view Kelly’s related posts from earlier in December and their comments at:
https://www.facebook.com/groups/isogg/permalink/10153830929022922/
and…
https://www.facebook.com/groups/isogg/permalink/10153828722587922/

My account at 23andMe has not yet been converted to the new format, so I cannot personally comment on the format changes yet, but I will write about the experience in 2016 after my account is converted.

Furthermore, I will also be writing a new autosomal vendor testing comparison article after their new platform is released.

I Hate 23andMe
https://digginupgraves.wordpress.com/2015/06/14/i-hate-23andme/

23andMe to Get Makeover After Agreement With FDA
http://dna-explained.com/2015/10/21/23andme-to-get-a-makeover-after-agreement-with-fda/

23andMe Metamorphosis
http://throughthetreesblog.tumblr.com/post/131724191762/the-23andme-metamorphosis

The Changes at 23andMe
http://legalgenealogist.com/blog/2015/10/25/the-changes-at-23andme/

The 23and Me Transition – The First Step
http://dna-explained.com/2015/11/05/the-23andme-transition-first-step-november-11th/

The Winds of Change
http://legalgenealogist.com/blog/2015/11/08/the-winds-of-change/

Why Autosomal Response Rate Really Does Matter
http://dna-explained.com/2015/02/24/why-autosomal-response-rate-really-does-matter/

Heads Up About the 23andMe Meltdown
http://dna-explained.com/2015/12/04/heads-up-about-the-23andme-meltdown/

Now…and not now
http://legalgenealogist.com/blog/2015/12/06/now-and-not-now/

                             Cone of Shame Award 2015 frown

Another award this year is the Cone of Shame award which is also awarded to both Ancestry and 23andMe for their methodology of obtaining “consent” to sell their customers’, meaning our, DNA and associated information.

Genetic Genealogy Data Gets Sold

2015 shame

Unfortunately, 2015 has been the year that the goals of both 23andMe and Ancestry have become clear in terms of our DNA data. While 23andMe has always been at least somewhat focused on health, Ancestry never was previously, but has now hired a health officer and teamed with Calico for medical genetics research.

Now, both Ancestry and 23andMe have made research arrangements and state in their release and privacy verbiage that all customers must electronically sign (or click through) when purchasing their DNA tests that they can sell, at minimum, your anonymized DNA data, without any further consent.  And there is no opt-out at that level.

They can also use our DNA and data internally, meaning that 23andMe’s dream of creating and patenting new drugs can come true based on your DNA that you submitted for genealogical purposes, even if they never sell it to anyone else.

In an interview in November, 23andMe CEO Anne Wojcicki said the following:

23andMe is now looking at expanding beyond the development of DNA testing and exploring the possibility of developing its own medications. In July, the company raised $79 million to partly fund that effort. Additionally, the funding will likely help the company continue with the development of its new therapeutics division. In March, 23andMe began to delve into the therapeutics market, to create a third pillar behind the company’s personal genetics tests and sales of genetic data to pharmaceutical companies.

Given that the future of genetic genealogy at these two companies seems to be tied to the sale of their customer’s genetic and other information, which, based on the above, is very clearly worth big bucks, I feel that the fact that these companies are selling and utilizing their customer’s information in this manner should be fully disclosed. Even more appropriate, the DNA information should not be sold or utilized for research without an informed consent that would traditionally be used for research subjects.

Within the past few days, I wrote an article, providing specifics and calling on both companies to do the following.

  1. To minimally create transparent, understandable verbiage that informs their customers before the end of the purchase process that their DNA will be sold or utilized for unspecified research with the intention of financial gain and that there is no opt-out. However, a preferred plan of action would be a combination of 2 and 3, below.
  2. Implement a plan where customer DNA can never be utilized for anything other than to deliver the services to the consumers that they purchased unless a separate, fully informed consent authorization is signed for each research project, without coercion, meaning that the client does not have to sign the consent to obtain any of the DNA testing or services.
  3. To immediately stop utilizing the DNA information and results from customers who have already tested until they have signed an appropriate informed consent form for each research project in which their DNA or other information will be utilized.

And Now Ancestry Health
http://dna-explained.com/2015/06/06/and-now-ancestry-health/

Opting Out
http://legalgenealogist.com/blog/2015/07/26/opting-out/

Ancestry Terms of Use Updated
http://legalgenealogist.com/blog/2015/07/07/ancestry-terms-of-use-updated/

AncestryDNA Doings
http://legalgenealogist.com/blog/2015/07/05/ancestrydna-doings/

Heads Up About the 23andMe Meltdown
http://dna-explained.com/2015/12/04/heads-up-about-the-23andme-meltdown/

23andMe and Ancestry and Selling Your DNA Information
http://dna-explained.com/2015/12/30/23andme-ancestry-and-selling-your-dna-information/

                      Citizen Science Leadership Award   2015 smile

The Citizen Science Leadership Award this year goes to Blaine Bettinger for initiating the Shared cM Project, a crowdsourced project which benefits everyone.

Citizen Scientists Continue to Push the Edges of the Envelope with the Shared cM Project

Citizen scientists, in the words of Dr. Doron Behar, “are not amateurs.” In fact, citizen scientists have been contributing mightily and pushing the edge of the genetic genealogy frontier consistently now for 15 years.  This trend continues, with new discoveries and new ways of viewing and utilizing information we already have.

For example, Blaine Bettinger’s Shared cM Project was begun in March and continues today. This important project has provided real life information as to the real matching amounts and ranges between people of different relationships, such as first cousins, for example, as compared to theoretical match amounts.  This wonderful project produced results such as this:

2015 shared cM

I don’t think Blaine initially expected this project to continue, but it has and you can read about it, see the rest of the results, and contribute your own data here. Blaine has written several other articles on this topic as well, available at the same link.

Am I Weird or What?
http://dna-explained.com/2015/03/07/am-i-weird-or-what/

Jim Owston analyzed fourth cousins and other near distant relationships in his Owston one-name study:
https://owston.wordpress.com/2015/08/10/an-analysis-of-fourth-cousins-and-other-near-distant-relatives/

I provided distant cousin information in the Crumley surname study:
http://www.slideshare.net/FamilyTreeDNA/roberta-estes-crumley-y-dna

I hope more genetic genealogists will compile and contribute this type of real world data as we move forward. If you have compiled something like this, the Surname DNA Journal is peer reviewed and always looking for quality articles for publication.

Privacy, Law Enforcement and DNA

2015 privacy

Unfortunately, in May, a situation by which Y DNA was utilized in a murder investigation was reported in a sensationalist “scare” type fashion.  This action provided cause, ammunition or an excuse for Ancestry to remove the Sorenson data base from public view.

I find this exceedingly, exceedingly unfortunate. Given Ancestry’s history with obsoleting older data bases instead of updating them, I’m suspecting this was an opportune moment for Ancestry to be able to withdraw this database, removing a support or upgrade problem from their plate and blame the problem on either law enforcement or the associated reporting.

I haven’t said much about this situation, in part because I’m not a lawyer and in part because the topic is so controversial and there is no possible benefit since the damage has already been done. Unfortunately, nothing anyone can say or has said will bring back the Sorenson (or Ancestry) data bases and arguments would be for naught.  We already beat this dead horse a year ago when Ancestry obsoleted their own data base.  On this topic, be sure to read Judy Russell’s articles and her sources as well for the “rest of the story.”

Privacy, the Police and DNA
http://legalgenealogist.com/blog/2015/02/08/privacy-the-police-and-dna/

Big Easy DNA Not So Easy
http://legalgenealogist.com/blog/2015/03/15/big-easy-dna-not-so-easy/

Of Babies and Bathwater
http://www.legalgenealogist.com/blog/2015/05/17/of-babies-and-bathwater/

Facts Matter
http://legalgenealogist.com/blog/2015/05/03/facts-matter/

Genetic genealogy standards from within the community were already in the works prior to the Idaho case, referenced above, and were subsequently published as guidelines.

Announcing Genetic Genealogy Standards
http://thegeneticgenealogist.com/2015/01/10/announcing-genetic-genealogy-standards/

The standards themselves:
http://www.thegeneticgenealogist.com/wp-content/uploads/2015/01/Genetic-Genealogy-Standards.pdf

Ancient DNA Results Continue to Amass

“Moorleiche3-Schloss-Gottorf” by Commander-pirx at de.wikipedia – Own work. Licensed under CC BY-SA 3.0 via Commons

Ancient DNA is difficult to recover and even more difficult to sequence, reassembling tiny little blocks of broken apart DNA into an ancient human genome.

However, each year we see a few more samples and we are beginning to repaint the picture of human population movement, which is different than we thought it would be.

One of the best summaries of the ancient ancestry field was Michael Hammer’s presentation at the Family Tree DNA Conference in November titled “R1B and the Peopling of Europe: an Ancient DNA Update.” His slides are available here:
http://www.slideshare.net/FamilyTreeDNA/r1b-and-the-people-of-europe-an-ancient-dna-update

One of the best ongoing sources for this information is Dienekes’ Anthropology Blog. He covered most of the new articles and there have been several.  That’s the good news and the bad news, all rolled into one. http://dienekes.blogspot.com/

I have covered several that were of particular interest to the evolution of Europeans and Native Americans.

Yamnaya, Light Skinned Brown Eyed….Ancestors?
http://dna-explained.com/2015/06/15/yamnaya-light-skinned-brown-eyed-ancestors/

Kennewick Man is Native American
http://dna-explained.com/2015/06/18/kennewick-man-is-native-american/

Botocudo – Ancient Remains from Brazil
http://dna-explained.com/2015/07/02/botocudo-ancient-remains-from-brazil/

Some Native had Oceanic Ancestors
http://dna-explained.com/2015/07/22/some-native-americans-had-oceanic-ancestors/

Homo Naledi – A New Species Discovered
http://dna-explained.com/2015/09/11/homo-naledi-a-new-species-discovered/

Massive Pre-Contact Grave in California Yields Disappointing Results
http://dna-explained.com/2015/10/20/mass-pre-contact-native-grave-in-california-yields-disappointing-results/

I know of several projects involving ancient DNA that are in process now, so 2016 promises to be a wonderful ancient DNA year!

Education

2015 education

Many, many new people discover genetic genealogy every day and education continues to be an ongoing and increasing need. It’s a wonderful sign that all major conferences now include genetic genealogy, many with a specific track.

The European conferences have done a great deal to bring genetic genealogy testing to Europeans. European testing benefits those of us whose ancestors were European before immigrating to North America.  This year, ISOGG volunteers staffed booths and gave presentations at genealogy conferences in Birmingham, England, Dublin, Ireland and in Nyköping, Sweden, shown below, photo compliments of Catherine Borges.

ISOGG volunteers

Several great new online educational opportunities arose this year, outside of conferences, for which I’m very grateful.

DNA Lectures YouTube Channel
http://dna-explained.com/2015/04/26/dna-lectures-youtube-channel/

Allen County Public Library Online Resources
http://dna-explained.com/2015/06/03/allen-county-public-library-online-resources/

DNA Data Organization Tools and Who’s on First
http://dna-explained.com/2015/09/08/dna-data-organization-tools-and-whos-on-first/

Genetic Genealogy Educational Resource List
http://dna-explained.com/2015/12/03/genetic-genealogy-educational-resource-list/

Genetic Genealogy Ireland Videos
https://www.youtube.com/channel/UCHnW2NAfPIA2KUipZ_PlUlw

DNA Lectures – Who Do You Think You Are
https://www.youtube.com/channel/UC7HQSiSkiy7ujlkgQER1FYw

Ongoing and Online Classes in how to utilize both Y and autosomal DNA
http://www.dnaadoption.com/index.php?page=online-classes

Education Award

2015 smile Family Tree DNA receives the Education Award this year along with a huge vote of gratitude for their 11 years of genetic genealogy conferences. They are the only testing or genealogy company to hold a conference of this type and they do a fantastic job.  Furthermore, they sponsor additional educational events by providing the “theater” for DNA presentations at international events such as the Who Do You Think You Are conference in England.  Thank you Family Tree DNA.

Family Tree DNA Conference

ftdna 2015

The Family Tree DNA Conference, held in November, was a hit once again. I’m not a typical genealogy conference person.  My focus is on genetic genealogy, so I want to attend a conference where I can learn something new, something leading edge about the science of genetic genealogy – and that conference is definitely the Family Tree DNA conference.

Furthermore, Family Tree DNA offers tours of their lab on the Monday following the conference for attendees, and actively solicits input on their products and features from conference attendees and project administrators.

2015 FTDNA lab

Family Tree DNA 11th International Conference – The Best Yet
http://dna-explained.com/2015/11/18/2015-family-tree-dna-11th-international-conference-the-best-yet/

All of the conference presentations that were provided by the presenters have been made available by Family Tree DNA at:
http://www.slideshare.net/FamilyTreeDNA?utm_campaign=website&utm_source=sendgrid.com&utm_medium=email

2016 Genetic Genealogy Wish List

2015 wish list

In 2014, I presented a wish list for 2015 and it didn’t do very well.  Will my 2015 list for 2016 fare any better?

  • Ancestry restores Sorenson and their own Y and mtDNA data bases in some format or contributes to an independent organization like ISOGG.
  • Ancestry provides chromosome browser.
  • Ancestry removes or revamps Timber in order to restore legitimate matches removed by Timber algorithm.
  • Fully informed consent (per research project) implemented by 23andMe and Ancestry, and any other vendor who might aspire to sell consumer DNA or related information, without coercion, and not as a prerequisite for purchasing a DNA testing product. DNA and information will not be shared or utilized internally or externally without informed consent and current DNA information will cease being used in this fashion until informed consent is granted by customers who have already tested.
  • Improved ethnicity reporting at all vendors including ancient samples and additional reference samples for Native Americans.
  • Autosomal Triangulation tools at all vendors.
  • Big Y and STR integration and analysis enhancement at Family Tree DNA.
  • Ancestor Reconstruction
  • Mitochondrial and Y DNA search tools by ancestor and ancestral line at Family Tree DNA.
  • Improved tree at Family Tree DNA – along with new search capabilities.
  • 23andMe restores lost capabilities, drops price, makes changes and adds features previously submitted as suggestions by community ambassadors.
  • More tools (This is equivalent to “bring me some surprises” on my Santa list as a kid.)

My own goals haven’t changed much over the years. I still just want to be able to confirm my genealogy, to learn as much as I can about each ancestor, and to break down brick walls and fill in gaps.

I’m very hopeful each year as more tools and methodologies emerge.  More people test, each one providing a unique opportunity to match and to understand our past, individually and collectively.  Every year genetic genealogy gets better!  I can’t wait to see what 2016 has in store.

Here’s wishing you a very Happy and Ancestrally Prosperous New Year!

2015 happy new year

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Disclosure

I receive a small contribution when you click on some of the links to vendors in my articles. This does NOT increase the price you pay but helps me to keep the lights on and this informational blog free for everyone. Please click on the links in the articles or to the vendors below if you are purchasing products or DNA testing.

Thank you so much.

DNA Purchases and Free Transfers

Genealogy Services

Genealogy Research

23andMe, Ancestry and Selling Your DNA Information

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Update: May 25, 2018 – Please note that with the advent of the GDPR legislation in Europe, this article is no longer current. Please read each company’s current statements about privacy and terms of service to understand their policies.
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Are you aware that when you purchase a DNA kit for genealogy testing through either 23andMe or Ancestry that you are literally giving these companies carte blanche to your DNA, the rights to your DNA information, including for medical utilization meaning sales to Big Pharm, and there is absolutely no opt-out, meaning they can in essence do anything they want with your anonymized data?

Both companies also have a higher research participation level that you can choose to participate in, or opt out of, that grants them permission to sell or otherwise utilize your non-anonymized data, meaning your identity is attached to that information.

However, opting out of his higher level DOES NOT stop the company from utilizing, sharing or selling your anonymized DNA and data.  Anonymized data means your identity and what they consider identifying information has been removed.

Many people think that if you opt-out, your DNA and data is never shared or sold, but according to 23andMe and Ancestry’s own documentation, that’s not true. Opt-out is not truly opt-out.  It’s only opting out of them sharing your non-anonymized data – meaning just the higher level of participation only.  They still share your anonymized data in aggregated fashion.

Some people are fine with this. Some aren’t.  Many people don’t really understand the situation.  I didn’t initially.  I’m very uncomfortable with this situation, and here’s why.

First, let me say very clearly that I’m not opposed to WHAT either 23andMe or Ancestry is doing, I’m very concerned with HOW, meaning their methodology for obtaining consent.

I feel like a consumer should receive what they pay for and not have their DNA data co-opted, often without their knowledge, explicit permission or full situational understanding, for other purposes.

There should also be no coercion involved – meaning the customer should not be required to participate in medical research as a condition of obtaining a genealogy test.  Most people have no idea this is happening.  I certainly didn’t.

How could a consumer not know, you ask?

Because these companies don’t make their policies and intentions clear.  Their language, in multiple documents that refer back and forth to each other, is extremely confusing.

Neither company explains what they are going to (or can) do with your DNA in plain English, before the end of the purchase process, so that the customer clearly understands what they are doing (or authorizing) IN ADDITION to what they intended to do. Obtaining customer permission in this fashion is hardly “informed consent” which is a prerequisite for a subject’s participation in research.

The University of Southern California has prepared this document describing the different aspects of informed consent for research.  If you read this document, then look at the consent, privacy and terms and conditions documents of both Ancestry and 23andMe, you will notice significant differences.

While 23andMe has clearly been affiliated with the medical community for some time, Ancestry historically has not and there is absolutely no reason for an Ancestry customer to suspect that Ancestry is doing something else with their DNA. After all, Ancestry is a genealogy company, not a medical genetics company.  Aren’t they???

Let’s look at each of these two companies Individually.

23andMe

At 23andMe, when you purchase a kit, you see the following final purchase screen.

23andMe Terms of Service

On the very last review page, after the “order total” is the tiny “I accept the terms of service” checkbox, just above the large grey “submit order” box. That’s the first and only time this box appears.  By this time, the consumer has already made their purchase decision, has already entered their credit card number and is simply doing a final review and approval.

In the 23andMe Terms of Service, we find this:

Waiver of Property Rights: You understand that by providing any sample, having your Genetic Information processed, accessing your Genetic Information, or providing Self-Reported Information, you acquire no rights in any research or commercial products that may be developed by 23andMe or its collaborating partners. You specifically understand that you will not receive compensation for any research or commercial products that include or result from your Genetic Information or Self-Reported Information.

You understand that you should not expect any financial benefit from 23andMe as a result of having your Genetic Information processed; made available to you; or, as provided in our Privacy Statement and Terms of Service, shared with or included in Aggregated Genetic and Self-Reported Information shared with research partners, including commercial partners.

Clicking on the privacy policy showed me the following information in their privacy highlights document:

  1. We may share anonymized and aggregate information with third parties; anonymized and aggregate information is any information that has been stripped of your name and contact information and aggregated with information of others or anonymized so that you cannot reasonably be identified as an individual.

In their full Privacy statement, we find this:

By using our Services, you agree to all of the policies and procedures described in the foregoing documents.

Under the Withdrawing Consent paragraph:

If you withdraw your consent for research your Genetic Information and Self-Reported Information may still be used by us and shared with our third-party service providers to provide and improve our Services (as described in Section 4.a), and shared as Aggregate Information that does not identify you as an individual (as described in Section 4.d).

And in their “What Happens if you do NOT consent to 23andMe Research” section:

If you do not complete a Consent Document or any additional consent agreement with 23andMe, your information will not be used for 23andMe Research. However, your Genetic Information and Self-Reported Information may still be used by us and shared with our third-party service providers to provide and improve our Services (as described in Section 4.a), and shared as Aggregate or Anonymous Information that does not reasonably identify you as an individual (as described in Section 4.d).

If you don’t like these terms, here’s what you can do about it:

If you want to terminate your legal agreement with 23andMe, you may do so by notifying 23andMe at any time in writing, which will entail closing your accounts for all of the Services that you use.

You can read the 23andMe full privacy statement here.

You can read the 23andMe Terms of Service here.

You can read the Consent document here.

Ancestry

Ancestry recently jumped into the medical research arena, forming an alliance with Calico to provide them with DNA information – that would be Ancestry’s customer DNA information – meaning your DNA if you’re an AncestryDNA customer. You can read about this here, here and here.

When you purchase an AncestryDNA kit, you are asked the following, also at the very end of the purchase process.  If you don’t click, you receive an error message, shown below.

Ancestry Terms and Conditions crop

Here are the Ancestry Terms and Conditions.

Here is the Ancestry Privacy Statement.

From Ancestry’s Terms and Conditions, here’s what you are authorizing:

By submitting DNA to AncestryDNA, you grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, world-wide, transferable license to use your DNA, and any DNA you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered. You hereby release AncestryDNA from any and all claims, liens, demands, actions or suits in connection with the DNA sample, the test or results thereof, including, without limitation, errors, omissions, claims for defamation, invasion of privacy, right of publicity, emotional distress or economic loss. This license continues even if you stop using the Website or the Service.

From their Privacy Statement, here’s what Ancestry says they are doing with your DNA:

vi) To perform research: AncestryDNA will internally analyze Users’ results to make discoveries in the study of genealogy, anthropology, evolution, languages, cultures, medicine, and other topics.

The is no complete opt-out at Ancestry either.

Now What?

So, how many of you read the Terms and Conditions and Privacy Statements at either 23andMe or Ancestry and understood that you were in essence giving them carte blanche with your anonymized data when you purchased your tests from them?

Is this what you intended to do?

How many of you understood that the ONLY way to obtain your genealogy information, ethnicity and matching is to grant 23andMe and Ancestry authorization to use your DNA for other purposes?

How many of you understood you could never entirely opt-out?

Where is your DNA?

Who has it?

What are they doing with it?

How much did or will Ancestry or 23andMe, or Big Pharm make from it?

Why would they want to obtain your DNA in this manner, instead of being entirely transparent and forthright and obtaining a typical informed consent?

Are they or their partners utilizing your DNA to design high end drugs and services that you as a consumer will never be able to afford?

Are they using your DNA to design gene manipulation techniques that you might personally be opposed to?

Do you care?

Personally, I was done participating in research when 23andMe patented their Designer Baby technology, and I’ve never changed my mind since.  There is a vast difference between research to cure Parkinson’s and cancer and focusing your research efforts on creating designer children.

People who do want medical information (such as from 23andMe) should be allowed to receive that, personally, for their own use – but no one’s DNA should be co-opted for something other than what they had intended when they made the purchase without a very explicit, separate, opt-in for any other usage of their DNA, including anonymized data.

Period.

People who purchase these services for genealogy information shouldn’t have to worry about their DNA being utilized for anything else if that’s not their specific and direct choice.

I shouldn’t have to opt-out of something I didn’t want and didn’t know I was signing up for in the first place – a type of usage that wouldn’t be something one would normally expect when purchasing a genealogy product. Furthermore, if I opt out, I should be able to opt out entirely.  You only discover opt-out isn’t truly opt-out by reading lots of fine print, or asking an attorney.  And yes, I still had to ask an attorney, to be certain, even after reading all the fine print.

Why did I ask a legal expert?  Because I was just sure I was wrong – that I was missing something in the confusing spaghetti verbiage.  I couldn’t believe these companies could actually do this.  I couldn’t believe I had been that naïve and gullible, or didn’t read thoroughly enough.  Well, guess what – I was naïve and gullible and the companies can and do utilize our DNA in this manner.

Besides that, “everyone knows” that companies can’t just do what they want with your DNA without an informed consent.  Right?  Anyone dealing with medicine knows that – and it’s widely believed within the genetic genealogy community.  And it’s wrong.

It seems that 23andMe and Ancestry have borrowed a page from the side of medical research where “discarded” tissues are used routinely for research without informed consent of the person from whom they originated.  This article in the New York Times details the practice, an excerpt given below:

Tissues from millions of Americans are used in research without their knowledge. These “clinical biospecimens” are leftovers from blood tests, biopsies and surgeries. If your identity is removed, scientists don’t have to ask your permission to use them. How people feel about this varies depending on everything from their relationship to their DNA to how they define life and death. Many bioethicists aren’t bothered by the research being done with those samples — without it we wouldn’t have some of our most important medical advances. What concerns them is that people don’t know they’re participating, or have a choice. This may be about to change.

Change is Needed

The 23andMe and Ancestry process of consent needs to change too.

I would feel a lot better about the 23andMe and Ancestry practices if both companies simply said, before purchase, in plain transparent normal-human-without-a-law-degree understandable language, the following type of statement:

“If you purchase this product, you cannot opt out of research and we will sell or utilize your anonymized results, including any information submitted to us (trees, surveys, etc.) for unspecified medical and pharmaceutical research of our choosing from which we and our partners intend to profit financially.”

If I am wrong and there is a way to opt out of research entirely, including anonymized aggregated data, while still retaining all of the genealogy services paid for from the vendor, I’ll be more than happy to publish that verbiage and clarification.

Today, the details are buried in layers of verbiage and the bottom-line meaning certainly is not clear. And it’s very easy to just “click through” because you have no choice if you want to order the test for your genealogy. You cannot place an order without agreeing and clicking the box.

This less-than-forthright technique of obtaining “consent” may be legal, and it’s certainly effective for the companies, guaranteeing them 100% participation, but it just isn’t morally or ethically right.

Shame on us, the consumers, for not reading the fine print, assuming everyone could understand it.

But shame on both companies for burying that verbiage and taking advantage of the genealogists’ zeal, knowing full well, under the current setup, we must authorize, without fully informed consent, their use of our DNA in order to test in their systems to obtain our genealogy information.  They know full well that people will simply click through without understanding the fine print, which is why the “I accept” box is positioned where it is in the sales process, and the companies are likely depending on that “click through” behavior.

Shame on them for being less than forthright, providing no entire opt-out, or better yet, requiring a fully informed-consent intentional opt-in.

Furthermore, these two large companies are likely only the tip of the iceberg – leading the charge as it were. I don’t know of any other DNA testing companies that are selling your DNA data today – at least not yet.  And just because I don’t know about it doesn’t mean it isn’t happening.

Other Companies

Family Tree DNA, the third of the three big autosomal DNA testing companies, has not and is not participating in selling or otherwise providing customer DNA or data for medical or third party research or utilization.  I confirmed this with the owners, this week.

Surely, if Ancestry and 23andMe continue to get away with this less than forthright technique, more companies will follow suit.  It’s clearly very profitable.

Today, DNA.Land, a new site, offers genetic genealogists “value” in exchange for the use of their DNA data.  However, DNA.Land is not charging the consumer for testing services nor obtaining consent in a surreptitious way.  They do utilize your DNA, but that is the entire purpose of this organization.  (This is not an endorsement of their organization or services – just a comment.)

GedMatch, a third party site utilized heavily by genetic genealogists states their data sharing or selling policy clearly.

It is our policy to never provide your genealogy, DNA information, or email address to 3rd parties, except as noted above.

They further state:

We may use your data in our own research, to develop or improve applications.

Using data internally for application improvement for the intended use of the test is fully legitimate, can and should be expected of every vendor.

Bottom line – before you participate in DNA testing or usage of a third party site, read the fine print fully and understand that no matter how a vendor tries, your DNA can never be fully anonymized.

Call to Action

I would call on both 23andMe and Ancestry to make what they are doing, and intend to do, with their customers DNA much more transparent. Consumers have the right to clearly know before they purchase the product if they are required to sign an authorization such as this and what it actually means to them.

Furthermore, I would call on both companies to implement a plan whereby our DNA can never be used for anything other than to deliver to us, the consumers, the product(s) and services for which we’ve paid unless we sign, separately, and without coercion, a fully informed consent opt-in waiver that explains very specifically and clearly what will occur with our DNA.

These companies clearly don’t want to do this, because it would likely reduce their participation rate dramatically – from 100% today for anonymized aggregated data, because there is no opt-out at that level, to a rate significantly lower.

I’m reminded of when my children were teenagers.  One of them took the car someplace they knew they didn’t have permission to go.  I asked them why they didn’t ask permission first, and they rolled their eyes, looked at me like I was entirely stupid and said, “Because you would have said no.  At least I got to go this way.”  Yes, car privileges were removed and they were grounded.

Currently 23andMe reports an amazing 85-90% participation rate, which has to reflect their higher non-anonymized level of participation because their participation rate in the anonymized aggregated level is 100%, because it’s mandatory.  Their “consent” techniques have come under question by others in the field as well, according to this article.  Many people who do consent believe their participation is altruistic, meaning that only nonprofit organizations like the Michael J. Fox Foundation will benefit, not realizing the full scope of how their DNA data can be utilized.  That’s what I initially thought at 23andMe.  Did I ever feel stupid, and duped, when that designer baby patent was issued.

Lastly, I would call on both companies to obtain a fully informed consent for every person in their system today who has already purchased their product, and to discontinue using any of the data in any way for anyone who does not sign that fully informed consent. This includes internal use (aside from product improvement), not just third party data sharing or sales, given that 23andMe is planning on developing their own drugs.

If you support this call to action, let both companies know. Furthermore, vote with your money and consumer voice. I will be making sure that anyone who asks about testing firms is fully aware of this issue.  You can do the same thing by linking to this article.

Call them:

23andMe – 1-800-239-5230
Ancestry – 1-800-401-3193 or 1-800-262-3787 in the US. For other locations click here

Write them:

23andMe – customercare@23andme.com
Ancestry – Memberservices@ancestrydna.com

I genuinely hope these vendors make this change, and soon.

For additional information, Judy Russell and I have both written about this topic recently:

And Now Ancestry Health
http://dna-explained.com/2015/06/06/and-now-ancestry-health/

Opting Out
http://legalgenealogist.com/blog/2015/07/26/opting-out/

Ancestry Terms of Use Updated
http://legalgenealogist.com/blog/2015/07/07/ancestry-terms-of-use-updated/

AncestryDNA Doings
http://legalgenealogist.com/blog/2015/07/05/ancestrydna-doings/

Heads Up About the 23andMe Meltdown
http://dna-explained.com/2015/12/04/heads-up-about-the-23andme-meltdown/

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Disclosure

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Thank you so much.

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