Native American Y Haplogroup C-P39 Sprouts Branches!

I am extremely pleased to provide an update on the Haplogroup C-P39 Native American Y DNA project. Marie Rundquist and I as co-administrators have exciting discoveries to share.

As it so happens, this announcement comes almost exactly on the 4th anniversary of the founding of this project at Family Tree DNA. We couldn’t celebrate in a better way!

Native American Y DNA Haplogroups

Haplogroup C is one of two core Native American male haplogroups. Of the two, haplogroup Q is much more prevalent, while haplogroup C is rare. Only some branches of both haplogroup Q and haplogroup C are Native American, with other branches of both haplogroups being Asian and European.

C-P39 is the Native American branch of haplogroup C, and because of its rarity, until now, very little was known. There were no known branches.

In February 2016, Marie Rundquist created a focused project testing plan to upgrade at least one man from each family line to the full 111 markers along with a Big Y test in order to determine if further differentiation could be achieved in the C-P39 haplogroup lineage.

Haplogroup C-P39 Sprouts Branches

In November 2016, Marie presented preliminary research findings at the International Genetic Genealogy Conference in Houston, Texas, with a final evaluation being completed and submitted to Family Tree DNA for review in March 2017. As a result, Marie provides the following press release:

April 29, 2017: Based on a recent “Big Y” DNA novel variant submission from the C-P39 Y DNA project, the Y Tree has been updated by Family Tree DNA scientists. With this latest update, in addition to the C-P39 SNP that distinguishes this haplogroup, there are now new, long-awaited, downstream SNPs and subclades, as reflected in the Y Tree that offer new avenues for research by members of this rare, Native American haplogroup. A summary of new C-P39 Y DNA project subclades follows:

  • North American Appalachian Region: C-P39+ C-BY1360+
  • North American Canada – Multiple Surnames: C-P39+ C-Z30765+
  • North American Canada – Multiple Surnames: C-P39+ C-Z30750+
  • North American Canada: Acadia (Nova Scotia): C-P39+ C-Z30750+
  • North American Canada: Acadia (Nova Scotia): C-P39+ C-Z30754+
  • North American Southwest Region: CP39+ C-Z30747+

The following SNP (BY18405+) was found to have been shared only by two C-P39 project members in the entire Big Y system, as reported here:

  • North American Canada Newfoundland: C-P39+ C-BY18405+
  • North American Canada: Gaspe, QC: C-P39+ C-BY18405+

The ancestors of two families represented in the study, one in the Pacific Northwest and another in the North American Southwest did not experience any mutations in the New World and Big Y results are within the current genetic boundaries of the C-P39 SNP haplogroup as noted.

The Family Tree DNA C-P39 Y DNA Project is managed by Roberta Estes, Administrator, Marie Rundquist, Co-Administrator, and Dr. David Pike, Project Advisor. The “Big Y” DNA test is a product of Family Tree DNA.

Reference: https://www.familytreedna.com/public/ydna_C-P39

The New Tree

The new C-P39 tree at Family Tree DNA is shown, below, including all the new SNPs below P39, a grand total of eight new branches on the C-P39 tree.

It’s just so beautiful to see this in black and white – well, green, black and white. It’s really an amazing accomplishment for citizen scientists to be contributing at this level to the field of genetics.

Beneath C-P39, several sub-branches develop.

  • BY1360 which is represented by a gentleman from Appalachia.
  • BY736 which is represented by two downstream SNPs that include the surnames of both King and Brooms from Canada.
  • Z30747 which is represented by a Garcia from the southwest US, following by downstream subgroup Z30750 represented by a Canadian gentleman, and SNP Z30754 represented by the Acadian Doucette family from Nova Scotia.

This haplotree suggests that the SNP carried by the gentleman from Appalachia is the oldest, with the other sub-branches descending from their common ancient lineage. As you might guess, this isn’t exactly what we had anticipated, but therein lies the thrill of discovery and the promise of science.

The Next Step

Just like with traditional genealogy, this discovery begets more questions. Now, testing needs to be done on additional individuals to see if we can further tease apart relationships and perhaps identify patterns to suggest a migration path. This testing will come, in part, from STR marker testing along with Big Y testing for some lines not yet tested at that level.

We’re also hopeful, of course, that anyone who carries haplogroup C-P39 or any downstream branch will join the C-P39 project. Collaboration is key to discovery.

Contributing

If you would like to donate to the C-P39 project general fund to play a critical role in the next steps of discovery, we would be eternally grateful. At this point, we need to fund at least 4 additional Big Y tests, plus several 111 marker upgrades, totaling about $3000. You can contribute to the project general fund at this link:

https://www.familytreedna.com/group-general-fund-contribution.aspx?g=Y-DNAC-P39

Thank you in advance – every little bit helps!

Kudos

I want to personally congratulate Marie for her hard work and dedication over the past year to bring this monumental discovery and tree update to fruition. It’s truly an incredible accomplishment representing countless hours of behind the scenes work.

Marie and I would both like to thank all of our participants, individuals who contributed funds to the testing, Dr. David Pike as a project advisor and, of course, Family Tree DNA, without whom none of this would be possible.

DNA Testing for Native Heritage

If you are male and have not yet Y DNA tested, but believe that you have a Native ancestor on your direct paternal (surname) line, please order at least the 37 marker test at Family Tree DNA. Your results and who you match will tell that story!

People with Native heritage on any ancestral line are encouraged to join the American Indian Project at Family Tree DNA. If you have tested elsewhere, you can download your results to Family Tree DNA for free.

For additional information about DNA testing for Native American heritage, please read Proving Native American Ancestry Using DNA.

James Watson TED Talk on How He Discovered DNA

Did you know that James Watson wanted to be an ornithologist?  I didn’t know that.  There are other surprises as well in Watson’s TED talk including his focus on cancer, autism and schizophrenia research.

His TED talk is interesting, and believe it or not, humorous.  Enjoy!

watson and crick

Above, a picture of Watson and Crick at Cambridge.

Below, Watson as a member of the RNA Tie Club.

RNA tie club

 

Game of Genomes

Game of Genomes

STAT is featuring a wonderful series called the Game of Genomes.

In this series, Carl Zimmer, a journalist, had his full genome sequenced AND managed to obtain the BAM file – which is no small feat. If you want to know why, you’ll need to read the article where he describes this saga.

In order to have his full genome sequence analyzed, Carl hand delivered the hard drive that his BAM file arrived on to a team of scientists.  Turning to several individuals at universities who used him as a case study, he is referenced as “Individual Z.”

Graduate students poured over his results, and then met with Carl to tell him what they found.

The great thing about this article is that, first, Carl writes about this extremely technical topic in a way that is understandable and interesting for normal air-breathing humans. No graduate degree required.

Second, and the part I find fascinating, is that Carl’s experience lets us peek beneath the hood into the underpinnings of the world of genomic sequencing along with giving us a periscopic view into the future.

Most people don’t realize we’re still on the frontier. Carl is on the very edge of that frontier.

You can read the series here. Keep scrolling for episodes – below the graphics.  To date, 5 episodes have been published. At the end, you can sign up for the next episode.

Lastly, you can view the Supplemental Materials produced by the various labs here.  Those are fascinating as well – but more technical in nature.

Burning Questions

So, I have to ask…

How brave are you?

Carl was told that he had 3,559,137 “differences” when compared to the reference human genome. Difference = mutation. Some of those differences could be protective, some could be carriers of disease, meaning they don’t affect Carl but would affect a child if his wife also carried that mutation, some could be harmless, some could be disease producing, and some could be deadly.

These differences have the potential to represent the full range of outcomes – and along with the outcomes – the full range of emotional terror – from nothing to full blown panic attack.

Carl also has some “broken genes.” We all do. Mostly, they don’t matter…but some could, would and do.  Carl’s apparently don’t – at least not much.

Would you want to know?

Would you want to know only if there was something that could be done?

Would this depress you or help you to plan your life more effectively?

Would this knowledge cause you anxiety or empower you?  Maybe even inspire you?

Keep in mind that what we think we know today is often revised tomorrow – especially on the leading, sometimes bleeding, edge.

Read the article and share your thoughts.

Having worked on the leading edge of technology for 30+ years and genetic genealogy for 15+, I can tell you that I would jump at this opportunity in a heartbeat. I must carry two copies of the “incessant compulsion to learn” gene!

Lighting Candles – Bill Howard, RIP

Dr. William E. Howard III

I received word today that one of my genetic genealogy “friends” has passed over. Dr. William E. Howard III was just known to us as Bill.

Most people didn’t know Bill was a PhD and had a distinguished career in astronomy. Genetic genealogy was his “second career,” after retirement, and he was responsible for devising the RCC methodology for determining the time to a most common recent ancestor for a group of men who have taken Y STR tests.

If you’re interested in his methodology, you can read more about it here or in the genealogy-DNA rootsweb archives and ISOGG@yahoogroups.com where he posted under the e-mails of wehoward@post.harvard.edu and wehowardiii@gmail.com and weh8@verizon.net.  Bill created a YouTube video that explains this methodology which is both interesting and educational.  What Bill’s methodology lacked, unfortunately, was an easy user interface.

CeCe Moore has also provided this link to Bill’s talk at the I4GG Conference in 2014, never before released except to paid subscribers, titled “Using Correlation Techniques on Y-Chromosome Haplotypes to Determine TMRCAs, Date STR Marker Strings, Surname Groups, Haplogroups and SNPs.”

This article really isn’t about Bill’s methodology, but how his thought processes and willingness to think about genetic genealogy in a different way and look at possibilities helped to revolutionize and actualize an infant field. We need an army of Bills, each contributing in their unique and individual ways.

Genetic genealogy attracts many great minds, often retired from distinguished careers with decades of invaluable experience. I think the fact that genetic genealogy is a new field, not yet defined and put into boxes of known quantities is part of what makes this field so attractive to these bright minds. There is still ample opportunity for truly meaningful and even revolutionary contributions.

Bill wasn’t afraid of scrutiny and he wasn’t afraid to fail. If you’re afraid to fail, in essence, you’ve already failed. And in the public social media world, scrutiny can be brutal.

Bill exemplified the role of a research genetic genealogist. He thought outside the box and then sought to prove or disprove his theories. He shared freely and depended on people submitting their data to be analyzed in order to refine his processes. He was willing to work with anyone at any level of experience. He was never condescending or treated anyone disrespectfully – his professional demeanor was impeccable. Far from being intimidating, Bill was very unassuming and tried to explain difficult concepts in ways that people could understand.  He encouraged everyone.

Bill knew that he was ill and used his last few months to “tie up” many of his loose ends, submitting several papers to JOGG for publication. I hope that these papers can be published posthumously in order to preserve his methodologies for posterity and for others to build upon, or discard, as appropriate. That’s the way science works and Bill wanted to contribute to that process.

You left your exchanges with Bill feeling good about genetic genealogy and not diminished in any way, even if you didn’t understand or agree with his theories or findings. I feel enriched and honored to have counted him among my colleagues. It’s people like Bill that have helped this field emerge from the unknown to a dinner conversation topic at the table of strangers next to yours in a restaurant.

Bill reached for the stars – in terms of his scientific approach and methodologies as well as his enabling and encouraging can-do attitude. To me, the great generosity with which Bill approached genetic genealogy and his fellow travelers in this field, regardless of their level of expertise, is Bill’s legacy.

I hope that Bill can serve as an inspiration. We need mentors, guides and good examples – and Bill was that above anything. We are all students, everyday. Learning is lifelong, cradle to grave.

We are all diminished when the flame is extinguished, too soon. I hope that Bill’s quiet example and gracious approach to genetic genealogy, and people, serves to light other candles.

Rest in Peace, Bill.

Update 6-27-2016: For anyone interested, I know Bill Howard was active in genealogy groups along the beltway around Washington DC, into Virginia. I received word today that his memorial service has been planned, per the following message from his family.

We wanted to let you know that the family has planned a Memorial Service for my father, Bill Howard, for July 23rd, 2016 at 2pm at Redeemer Lutheran Church.
The address for Redeemer is:
1545 Chain Bridge Road
McLean, VA 22101

23andMe, Ancestry and Selling Your DNA Information

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
https://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
https://dna-explained.com/2015/12/04/heads-up-about-the-23andme-meltdown/

Allen County Public Library OnLine Resources

I originally wrote this article for the Native Heritage Project blog, but there are a lot of resources here that apply to all genealogists – and as we all know, the genealogy aspect of genetic genealogy is extremely important.  While DNA is a wonderful tool, it works best in conjunction with traditional research – which has become much easier in the past few years due to increasing numbers of online resources.

The Allen County Public Library in Fort Wayne Indiana is far more than a local, county, state or even regional resource. It’s one of the premiere genealogy libraries in the country and draws researchers from all states and Canada with its very large collection and dedication to genealogists.  One of its best features is that many of their resources are available online.  However, if you ever get the chance to visit, absolutely, do – it’s a wonderful place!

The ACPL publishes a free periodic newsletter, Genealogy Gems, published by Curt Witcher,  that you can subscribe to by going to the website: www.GenealogyCenter.org. Scroll to the bottom, click on E-zine, and fill out the form. You will be notified with a confirmation email.

This month’s issue included several research tips and hints about African and Native American research which I’d like to share with you.  I’m quoting part of an article written by Curt, and I’m inserting instructions that weren’t part of the original.

Working The GenealogyCenter.org Website–Part Two by Curt B. Witcher

Last month, we took some time to explore a number of marque features on http://www.GenealogyCenter.org. We started with the main page, and that is where I would like to start again this month. On the right-hand side, immediately beneath the search boxes for our free databases and our online catalog, one will find a section called “Family History Archives.” This is one “springboard section” I alluded to at the end of my column last month.

This archive section provides one with direct links to copyright-clear materials that have been digitized from the collections of The Genealogy Center. We have digitizing partnerships with both FamilySearch and the Internet Archive. More than 170,000 local and family history publications are available for free use on FamilySearch.org as a result of this multi-organization cooperative. Thousands of Genealogy Center books are available online through this site. More than 80,000 Genealogy Center books and microfilm are available through the Internet Archive web site, archive.org. As with FamilySearch, these materials are available for free. One can view the items online, save as PDF documents, and even download to a Kindle.

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Be sure to take advantage of this resource by clicking on “Internet Archive” under “Family History Archives.”  It’s amazing.

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Just take a look at the most downloaded items last week.

internet archives most downloaded

The internet archives are searchable by key word.

Appreciating the challenges of African American and First Nations/Native American research, The Genealogy Center offers two gateways for those interested in these areas of research. The African American Gateway is organized by states, regions, countries outside the United States, and subjects. Within each area, one will find a significant collection of relevant websites along with a comprehensive list of Genealogy Center resources for the specific state, region, country, or subject in which one is interested. There are nearly 10,000 Internet sites categorized in this gateway. Using this gateway is a good way to quickly access pertinent materials to advance one’s research.

To find the Native American and African American gateways, click on “Databases” at the top of the page on the blue bar.

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You will then see the options for both the African and Native Gateways under the “Databases and Files” section.

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The Native American Gateway is organized a bit differently. The first link in this gateway is to short guide on how to begin doing Native American research. Whether just starting or continuing this type of research, taking a quick look at this outline may be quite beneficial.

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The rest of the links on the left-hand side of main gateway webpage are quick access points to The Genealogy Center collection. The “Microtext Catalog” link takes one to a table that lists all Native American materials in this format. The table begins with a listing of general or multi-tribe materials followed by an alphabetical list of tribe-specific materials. The “Genealogy Center Catalog” link takes one directly to a search screen where one can enter a tribe name, surname, or geographic location to get results specific to The Genealogy Center collection. Under the “Collection Bibliography” link, one will find the additional links of “Tribes,” “Locations,” and “General.” The “Tribes” and “Locations” links are likely the most useful as one can find Genealogy Center-specific materials on more than 150 tribes as well as U.S. states and regions as well as Canada and Mexico. Like the many other snapshots continually updated by Center staff, the Native American snapshot contains major indices and research works to assist one in conducting this challenging research. Further, there are specific materials listed for eight major tribes.

On the right-hand side of the Native American Gateway main page, researchers will find links to “Websites,” “First Nations of Indiana,” “Indian Census Records,” “Cherokee Records,” and “National Archives Guides.” The “Websites” list and “First Nations of Indiana” are not intended to be comprehensive but rather to provide one with some major sites that can offer both solid info and links to other web resources. The “Indian Census Records” section provides several dozen links to important information about First Nations’ enumerations–where they can be found, how to get access them, and how to use that data they contain. The “Cherokee Records” link takes one to the National Archives’ website, “The Dawes Rolls (Final Rolls of the Citizens and Freedmen of the Five Civilized Tribes in Indian Territory).” More links will be added to this site in the future. This gateway is rounded-out with links to three significant guides to National Archives and Records Administration guides.

Have a great time utilizing these new resources and the best part is that you don’t have to leave at closing time!!!

Memorial Day – Grieving the Losses

floppy discs

It’s Memorial Day weekend.  Time for picnics and barbeque grills.  And for thinking about, and honoring those that have departed.

Originally, Memorial Day was to honor the war dead following the Civil War – although it then morphed into a holiday to honor all Americans who died in the military service.  Also called Decoration Day, it has become a time to honor all of our ancestors, visit the cemetery, pull some weeds, add some flowers, relive the good memories and say a solemn prayer.  Some folks are too far from home, or from our ancestors’ homes, to do those things, so we have to honor our ancestors in other ways.

I’ve chosen to spend this weekend sorting through a particularly thorny genealogical problem involving 4 generations of Crumley men, two of which were veterans, all with the same first name, some with unknown wives, confusing signatures and more.  This is part of my 52 Ancestors series, so you’ll get to meet them soon.

I’ve been working on these lines now for almost 20 years.  I was lucky, because when I started, there were a few who had come before me, and one who had published a book, for which I am EXTREMELY thankful.

Starting about 15 years ago, my correspondence slowly morphed from letters in the mailbox to e-mails which I diligently filed and still have today.  Yes, truly I do.

But that’s part of what I’m grieving today.  No, I didn’t lose my e-mails. I’m a backup fiend.

What I’ve lost…what we’ve lost…is a legacy of research – and with it part of our ancestors.  How big a part?  I guess we’ll never know.

Fifteen years ago, there were two primary researchers who were very actively researching…as in visiting courthouses…retaining professional genealogists…and who clearly did not wish to share until they were done.  I can understand part of that, at least to a degree.  No one wants to put half-baked ideas into the wild, so to speak.

But, and this is a really BIG BUT, there is a limit – and they clearly went past that limit.  They died.  Their books are unpublished.  Their research and maps they had assembled using neighbors’ deeds, all gone.  The family Bibles they said they had found among descendants – that information too all gone.  Letters – gone.

Gone.

Poof.

Forever.

They never shared with any of the rest of us.

I contributed information. Many did.

I volunteered five years ago to proofread the two books that one woman wrote that were “nearly ready” but she didn’t need any help.  But she never published, and then she died.  Her husband is in his mid-90s, if he’s still living, and his e-mail no longer works.  At least this researcher did write some articles about these ancestors, which is not the same as two books with promised discoveries that correct earlier research…but it was something.

The second person refused to share at all, not wanting anyone to scoop his book.  That would be the book, by the way, that has never been written.  He is now in his late 80s (if he is still alive) and his e-mail is also now defunct.  When do you think we can expect that book???

A third long-time researcher came to a Crumley meeting years ago with 3 ring binders of his work.  He did share, generously, but sharing bit by bit on lists is not the same as a body of work that he clearly had.  Where are his years of hard work today???

But that’s not all of it….not nearly all.

In many of the hundreds of e-mails that I’ve saved there were links to works and websites of both primary and collateral lines.  I probably tried 40 or 50 links altogether over the past two days.  Know how many worked?  None.  Not one.  The most current ones were only about 4 years old.  Dead as doornails…all of them.  I was so surprised that they were ALL dead that I checked my system to be sure the problem wasn’t on my end – but it wasn’t and they are all dead.  RIP

web page not found

This is disconcerting.  Some were free rootsweb pages, some were on private sites and some were other types of pages, like ones sponsored or connected to genealogy programs.  But the point is that all of those researchers that had something to share no longer do.  It’s gone.  For all I know, they may be gone too.

Once your website and your e-mail is inoperable – you’re electronically dead to people with whom you communicate in that fashion.  There is no electronic phone book for e-mails.  It’s not like it used to be – you can’t just drive across town to check on your cousin.  Nor are their children going to know who their online cousins are.  You are likely not going to be notified of their death – let alone be considered as the steward of their work.

Yes, you can sometimes find defunct website information, at least pieces of it, using Internet Archive’s Waybackmachine – but it’s seldom complete.  If it’s there, it’s better than nothing.

That information too, all of those links I saved because I would need them one day, is now gone.  Some are entire websites devoted to family research of a particular family, like Brown and Johnson.  Fortunately, some of the articles have been reproduced on the Greene County, TN GenWeb site.  And yes, thankfully that is still working just fine. Google is your friend if the information is out there anyplace.

But think again about what you expect to be “forever” or at least be available to you at a later date.  With the shuffling in the genealogy marketspace recently, a lot has changed.  GenForum, bought by Ancestry, is no longer functional – meaning you can read but not post.  Rootsweb list and board usage is significantly down – in favor of non-archiving social media like Facebook.  Rootsweb trees still include text notes uploadable from a GEDCOM file, but Ancestry trees do not.  Yes, you can copy all of your text into files and add them as documents to your Ancestry tree – but it’s a huge pain in the you-know-what and virtually no one is going to do that.  Ancestry actively discourages that, because they would rather have you attach their records – which is fine – but I’ve yet to see Ancestry have the records I have for my ancestors.  All I can say is I wish they did.  But be aware that if you attach Ancestry’s records to your tree, and you choose to download that GEDCOM file, it’s without any of those attached records.

And with the demise of MyFamily, also discontinued by Ancestry, which upsets people so badly we’re not even going to discuss it, not only did years worth of compiled family history get shuffled to the electronic trash can…people became terribly discouraged about sharing and trusting any “forever source.”

And I haven’t even mentioned the fallacy that your tree is “forever” or safe on a third party site.  I would suggest you keep your main tree right on your computer and use a third party site as a backup if you wish.  But I don’t want to confuse the point.  Sharing a tree is NOT the same as sharing research.  A tree is the skeleton of your family.  Research is the story of your ancestors’ lives – the meat on the bones.

So, now it’s up to you.  It’s not up to Rootsweb, Ancestry, Facebook or anyone else.  It’s up to you, just you.  You need to write.  You need to publish.  There are many sources for you to be able to do this today.  No need to know how to write html code anymore.  Publishing is easy and there is no technology excuse.

I’ve chosen the WordPress platform and blogging.  There are other free sites like www.weebly.com (disclosure – I have not used this site personally) and other free and paid websites.  I pay for mine so that I get to choose my domain name and I have more storage space.  However, when I no longer pay for it, it too will be gone.  WordPress claims their free sites will be available forever, whatever forever means today.

But what about when I die, when I join my ancestors and when someone, hopefully, comes to pull the weeds and decorate my grave on Memorial Day?  What about my work?  Well, hopefully because I HAVE made it public because I HAVE shared, because I have NOT held back waiting on forever or someday or perfection – it will be out there – circulating around in cyber space.  Is it perfect?  No – but it’s there and it’s far better than nothing – better than the unpublished book that will never see the light of day.  Because it’s online and not committed to ink and paper, it’s easy to update an ancestor’s article with new information.

I wish there was a cyberbank where I could sign up to be sure certain things are available forever, however long forever is.  I’d bank these stories and a raft of DNA results as well.

I’m going to put each of the lines I’ve been researching on a free “forever” website when I’m finished with my 52 ancestors series.  For me, it will be WordPress because I know and love the platform already.  And yes, I really will do that just like I really do write my weekly ancestor article.  And if I die tomorrow, at least those articles are in print, someplace, even if my website and blog will one day be defunct.

And as for the DNA, it’s a part of every ancestor’s story.  DNA results and how we utilize them are an integral part of every family story now and relevant in one way or another to every ancestor.  DNA is in every one of my 52 Ancestors stories one way or another.

I’ve also arranged with the Estes archivist to place the Estes family articles on the Estes family archive website as well.  Not via a link, but posting the actual articles.  Links only work as long as the original site is functional.  Same goes for the Estes newsletter which is distributed to subscribers and libraries.  Plus, I’ve shared with just about every cousin I can think of.  Just sharing the love, and the ancestors!!!

I’m going to print these ancestor articles in book format and donate them to several significant libraries including the Allen County Public Library and the Church of Jesus Christ of Latter Day Saints – yes – the Mormons.  I want my work in that vault.  And by the way, I’m not Mormon, but given that their driving force is a religious conviction that genealogy is important – and not profit like a corporation – I feel that my research stands a better chance of preservation there than in the hands of any corporation.  If you’re looking for an ugly corporate example – just take a look at what Ancestry.com did with their Y and mitochondrial DNA database and then a few months later with the Sorenson data base as well.

I’m going to print my work for my descendants, in book form, with archival ink on archival paper, because electronic formats will change significantly over the years.  If you don’t believe me, just try to find something to read an 8 inch or 5.25 inch “floppy disc” now.  So, yes I’ll give them a CD or DVD or thumb drive too – but in 50 years, they’ll still be able to read the book (it’s not in cursive.)

So, here’s my take on this situation.  No one owns the ancestors.  I hope people do not hold the information about their ancestors’ lives hostage…for good reasons or bad…because none of us know which day our proverbial number is going to be up.

Memorialize your ancestors.  Share their lives and their history.  Write about them.  State what you know and what you don’t.  List sources so others in the future can verify your work, update it, add to it, or look where you haven’t.

Make sure that when you die, people celebrate what you DID with your life and grieve the fact that such a wonderful, sharing person departed this earth, and that they aren’t grieving what you didn’t do, or worse yet, what you did do, but never shared or published or is no longer available in any format.  That’s certainly not how I want to be remembered, nor the legacy of my ancestors I want to leave.  They may be gone, but I want to celebrate their lives, preserving them forever for all the generations to come!

Do you have ideas or suggestions for how to permanently memorialize your ancestors?  What steps have you taken?