No (DNA) Bullying

Posted on May 15, 2013 by Roberta Estes

There are hardly any hobbies that hold more passion than genealogy. Once hooked by the bug, most people never retire and one of the things they worry about passing down to their family are their genealogy records – even if the family of today isn’t terribly interested.

So it’s easy to understand the degree of passion and enthusiasm, but sometimes this passion can kind of go astray and it crosses the line from something positive to something not nearly so nice.

Genetic genealogy is the latest tool in the genealogists’ arsenal, but it introduces some new challenges and unfortunately, with the increased number of people testing, we’re seeing some examples of what I consider bullying – for DNA, for identification and for information.

Bullying is unwelcome aggressive behavior that involves repeated threats, physical or electronic contact or a real or perceived imbalance of power. Generally, the victim feels they can’t make it stop. This has become especially prevalent in the cyber age. And bullying is not just about kids.

I’m going to look at 3 types of situations. It’s easy to see both perspectives, but bullying by any other name is still bullying, even though the bully probably doesn’t see it that way. Guaranteed, the recipient does.

You’ve Got the DNA I Need

Let’s say that Aunt Gladys is the last person alive in a particular line who can provide DNA to represent that line. But Aunt Gladys, for whatever reason, doesn’t want to test. It’s fine to discuss this, to talk about her concerns, and perhaps you can find a solution to address them, like testing anonymously.

But let’s say that Aunt Gladys simply says “no,” end of story. What then?

Yes, Aunt Gladys carries the information that you need, but it’s HER DNA that needs to be tested, and if she says no, then her decision should be respected, as difficult as it may be and as unreasonable as it may seem. Maybe Aunt Gladys knows something you don’t – like she is adopted or some other secret that she does not wish to reveal. Badgering Aunt Gladys from this point forward is going to do nothing other than cause hard feelings and make Aunt Gladys want to avoid you.

You may think you’re “just discussing” but from her perspective, you may be bullying. Now, it’s OK to beg and cry once, but if you’re slipped into the realm of “if you don’t test, I’ll tell Uncle Harvey that you scratched his car back in 1953,” you’ve stepped over that line.

Won’t Answer E-Mails

I can’t tell you how often I hear this story. “I match with person XYZ and they won’t share their information.” Most of the time, they won’t answer e-mails. And the question follows, of course, as to why they tested in the first place.

These tests have been around for a number of years now. Many people have died or moved or the purpose of the test was fulfilled and they aren’t interested beyond that. Think of your Aunt Gladys. If you did convince her to test, it wouldn’t be for her, but for you and she certainly would not be interested in answering random e-mails.

There could be a number of reasons, depending on the testing company used, that someone might not answer. In particular, many people test at 23andMe for health reasons. It doesn’t matter to them if you’re a first cousin or any other relation, they simply aren’t interested or don’t have the answers for you.

It’s alright to send 2 or 3 e-mails to someone. E-mails do get lost sometimes. But beyond that, you’ve put yourself into the nuisance category. But you can be even worse than a nuisance.

I know of one case where someone googled the e-mail of their contact, discovered the person was a doctor, and called them at the office. That is over the line into cyber-stalking. If they wanted to answer the e-mail, they would have. If they don’t want to, their decision needs to be respected.

I Know You Know

This situation can get even uglier. I’ve heard of two or three situations recently. One was at Ancestry where someone had a DNA match and their trees matched as well. At first the contact was cordial, but then it deteriorated into one person insisting that the other person had information they weren’t divulging and from there it deteriorated even further.

This is a hobby. It’s supposed to be fun. This is not 7th grade.

Adoptions

However, there are other situations much more volatile and potentially serious. In some cases, often in adoptions, people don’t want contact. Sometimes it’s the parent and sometimes it’s the adoptee. But those aren’t the only people involved. There are sometimes half-siblings that are found or cousins.

For the adoptees and the parents, there are laws in each state that govern the release of their legal paperwork to protect both parties. Either party can opt out at any time.

But for inadvertently discovered family connections, this isn’t true. Think of the person who doesn’t know they are adopted, for example, who discovers a half-sibling and through that half sibling their biological mother. Neither person may welcome or be prepared for this discovery or contact.

Imagine this at the dinner table with the family gathered, “Hey guess what, I got a half-sibling match today on my DNA. I wonder if that’s some kind of mistake. How could that be?”

So if you match someone as a half sibling or a cousin, and they don’t want to continue the conversation, be kind and respectful, and leave the door open to them if they change their mind in the future. Pushing them can only be hurtful and nonproductive.

Dirty Old (and Formerly Young) Men

And then, there’s the case of the family pervert. Every family seems to have one. But it’s not always who you think it is. By the very nature of being a pervert, they hide their actions – and they can be very, very good at it. Practice makes perfect.

Let’s say that Jane likes genealogy, but she was molested as a child by Cousin Fred. Some of the family knows about this, and some don’t believe it. The family was split by this incident, but it was years in the past now. Jane wants nothing to do with Fred’s side of the family.

(By the way, if you think this doesn’t happen, it does. About 20% of woman have been raped, 30% of them by family members (incest), many more molested, and children often by relatives or close family friends. 15% of sexual assault victims are under the age of 12. Many childhood cases are never prosecuted because the children are too young to testify. Perverts and pedophiles don’t wear t-shirts announcing such or have a “P” tattooed on their forehead. Often family members find it hard to believe and don’t, regardless of the evidence, casting the victimized child in the position of being a liar and “troublemaker.” Need convincing? Think of what Ariel Castro’s family said and how well he hid his dark side and the Boston bombers’ family comments about their innocence in the face of overwhelming evidence to the contrary.)

Jane’s an adult now and DNA tests. She has a match and discovers that it’s on Fred’s side of the family. Jane tells the person that she doesn’t want anything to do with that side of the family, has no genealogy information and wants no contact. The match doesn’t believe Jane and then becomes insistent, then demanding, then accusatory, then threatening.

This is clearly over the line. Jane said she didn’t want any continued contact. That should have been the end of the discussion.

But let’s say this one gets worse. Let’s say that because of this, Cousin Fred wakes up and decides that Jane is interesting again and begins to stalk Jane, and her children……

Does this make you shake in your shoes? It should. Criminals not only aren’t always playing with a full deck, but don’t play by any of the same rules as the rest of us. Cousin Fred might just be very grateful for that information about Jane and view it as a wonderful “opportunity,” provided by his “supportive” family member who has now endangered both Jane and her children.

Who’s Yer Daddy?

In another recent situation, John discovered by DNA testing that he is not the biological child of his father. He subsequently discovered that his mother was raped by another male, married to another close family member. When John discovered that information, he promptly lost interest in genealogy altogether.

A year or so later, John matched someone closely who was insistent that he provide them with how he was related to them. John knew, but he did not feel that it was any of their business and he certainly did not want to explain any of the situation to the perpetrator’s family member, who, by the way, had already mentioned what a good person the perpetrator was. However, the person continued to harass and badger John until he changed his e-mail address.

I so wanted to ask these people, “What part of “NO” don’t you understand?”

Mama’s Baby, Daddy’s Maybe

In one final example, adoptees often make contact with their birth mother first, and then, if at all, with their birth father. Sometimes the birth mothers are not cooperative with the (now adult) child about the identity of their father. Often, this is horribly frustrating to the adoptee. In at least one case, I know of a birth mother who would never tell, leaving the child an envelope when she died. The child was just sure the father’s name was in the envelope, but it was not. I can only imagine that level of disappointment.

Why would someone be so reticent to divulge this information? The primary reasons seem to be that either the mother doesn’t know due to a variety of circumstances that can range from intoxication to rape, the woman never told the father that she had a baby and placed the child for adoption, the father was abusive and the mother was/is afraid of him/his family, the father was married, or the father was a relative, which means not only might the father still be alive, the mother may still have a relationship of some type with him. The mother may have lied for years to protect herself, and in doing so, protected the father as well.

Clearly, this situation has a lot of potential to “shift” a lot of lives and not always in positive ways. One woman didn’t want to make contact with her child other than one time because she had never told her husband of 30 years that she had a child before their marriage. One woman made contact, but did not want to divulge that the child’s father was her older brother, still alive. Victims often keep the secrets of their attackers out of misplaced shame and guilt. Think Oprah here. Mother may not be simply being stubborn, but acting like the victim she is and trying to preserve whatever shreds of dignity are left to her. She may also be embarrassed by a lapse in judgment. One adoptee realized when counting forward from her birth date that she was conceived right at New Years and when she realized that, she figured out that her mother, who drank heavily when she was younger, probably did not know who her father was, and didn’t want to admit that.

As frustrating as this is for the adoptee, the birth mother does have the right not to have her life turned upside down. Badgering her will only result in losing the potential for a relationship from the current time forward. Being respectful, understanding and gentle may open the door for future information.

R-E-S-P-E-C-T

I can hear Aretha now.

If you haven’t walked a mile in their moccasins, so to speak, you can’t possibly know the situation of the person on the other end of your request for DNA or information. Don’t make the mistake of stepping over the line from excitement into bully behavior.

Think of the potential situations the person on the other end may be dealing with. Ultimately, if they say no, then no it is and no should be enough without an explanation of why. Generally bullying doesn’t work anyway, because someone who feels like you are threatening them or being too aggressive will clam right up and it will be that proverbial cold day in Hades before they tell you anything. It’s important to keep communications from sounding like you’re demanding or entitled. My mother always said “you’ll catch more flies with honey than with vinegar.” I always found that very irritating, probably because I needed to hear it just then – but regardless – it’s true.

Keep in mind, genetic genealogy is about genealogy. It’s a hobby. It’s fun. If it becomes otherwise and puts people at jeopardy, then we need to take a step back and take a deep breath.

Most people don’t mean to cross the line into bullying. They just get excited and sometimes desperate. Hopefully this discussion will help us all be more aware of where the polite line is in communicating with our family members and matches.

If you are the victim of information bullying, cyber-stalking or someone puts you in an uncomfortable situation, there are steps you can take to remedy the situation. Most bullying sites are directed at adolescents, but the advice still applies.

If you know you don’t want contact initially, then make your accounts anonymous or don’t respond to requests. If you realize that you don’t want contact after the initial contact, for whatever reason, say so. After that, do not engage in communications with someone who is attempting to bully you. If they threaten you or threaten to reveal information or your identity if you don’t give them information or do something, that action falls into the blackmail realm, which a crime. Complying with a threat to protect yourself or your family generally only results in more of the same. You are not dealing with a nice person. At this point, you are way beyond genealogy and your own internal “danger” sign should be flashing bright neon red.

If disengaging does not take care of the problem, save all messages/contacts and contact your attorney who may advise you to contact the police or the FBI if the problem crosses state lines. Depending on what state you/they live in and exactly what they have done, you may have a variety of options if they won’t stop, especially if they do something that does in fact manage to turn your life upside down and/or a crime is involved, like blackmail. Of course, this is akin to closing the barn door after the cow leaves. Hopefully, the person causing the problem is simply an over-zealous genealogist, means you no harm, realizes what they have done or are doing, and will get a grip and compose themselves long before this point.

Bullying of course is not because of DNA or unique to genetic genealogy, but the new products introduce new social situations that we have not previously had tools to discover nor the opportunity to address in quite the same way.

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Hackers and Your Genetic Secrets

Posted on January 20, 2013 by Roberta Estes

Did that title get your attention? Well, it was meant to, just like it was meant to in this NBC article titled “Scientists Demonstrate How Hackers Could Unlock Your Genetic Secrets.” Or how about this one in the New York Times, “Web Hunt for DNA Sequences Leaves Privacy Compromised?” Sensationalism sells….and so does fear. Don’t panic, the sky is not falling.

I’ve had several people forward me a variety of links to several articles about this expressing concern. Most people didn’t really understand what was going on…and since “family tree databases” were mentioned in the first paragraph, it frightened them.

This article says that the “security cracking trick relies on the availability of genetic information linked to surnames in a variety of public family-tree databases.” Well, that’s sort of true, but not exactly true. The issue is not the family tree databases, it’s the fact that the researchers in The Thousand Genomes Project, while keeping the names of those 1000 people “anonymous,” provided enough information that these scientific researchers, not hackers, were able to data mine the 1000 Genomes participants information to determine their Y-DNA marker values, then compared those haplotypes (marker values) just like we do in databases such as Ysearch and Sorenson. And yes, they likely had matches to several surnames, like most of us do.

Individuals in the 1000 Genomes Project signed a release indicating that they knew that their data was to be used publicly, although their identity would not be revealed but that researchers could not guarantee their privacy. The 1000 Genomes Project, unfortunately, posted the ages of the participants, which at the time seemed innocuous enough, and it was common knowledge within the scientific community that they all lived in Utah. With these three pieces of information, their age, their location, and from the scientists data mining, a possible surname, the scientists were then able, if the surname wasn’t something like Smith or Jones, to use publicly available Google and “white pages” types of searches to find people in that state, of that age, by that surname, and then using obituaries and such, connect them through online family trees to their more distant families. They did this with Craig Venter, for example.

This technique is nothing new to genealogists, as we’ve been finding cousins that way for years – the difference being of course that we didn’t data mine, otherwise in this case more aptly referred to as “scientific hacking,” the 1000 Genomes Project in order to find their Y-line DNA markers to determine a possible surname for them. That is the issue and the point of this article and ironically, it’s scientists who did it, then published the “how-to” manual.

Any genetic genealogist knows, especially anyone dealing with adoptees, that you can only reveal a biological surname about 30% of the time. In fact the scientists success rate was lower, 12%. But that’s actually irrelevant in the bigger context of the article. Their point was that they succeeded at all.

This is sort of like putting personal information on the internet, except your name, and then being surprised that someone could connect the dots and put the pieces together. No one would be surprised today if that were to happen. In fact, I’m sure we all have received cautions and warnings about putting too much info on Facebook because burglars were robbing homes when people were vacationing. Many people have their hometown, their high school and their birthday and year publicly available on Facebook. Now how many “security questions” does that answer right there? Combine that with your dog’s name and your mother’s maiden name and you’ve got almost all of the common ones.

Aside from the fear-mongering, I have three issues with these reports as a whole.

1. Statements like “they traced those three family tree pedigrees to find other connections between relatives and sensitive genetic data.” Whoa, stop right there. Just because you share a surname or even if you are a direct and immediate relative, that says nothing, absolutely nothing, about whether or not you inherited some genetically disposed health issue. Remember, children inherit half of their DNA from each parent. So unless they are finding identical twins or parents, one cannot infer that an entire family tree of people share frightening health traits. It’s irresponsible to suggest otherwise.

2. “For years, experts have worried that sensitive genetic data could be used to discriminate against patients, potential employees or would-be insurance customers. Such discrimination is illegal when it comes to employment or health insurance, but the law doesn’t’ cover life insurance, disability insurance or long-term care insurance. Theoretically an insurer could search through genetic records and turn you down because you have a genetic predisposition to, say, Alzheimer’s disease.”

Discrimination is an issue, and laws have been put in place to prohibit discrimination in the workplace. But insurers aren’t going to sift through genetic data like a private investigator. Suggesting this is unnecessary fear-mongering. Insurers don’t do that, they simply tell you that a blood test is a pre-requisite of obtaining insurance. I know, I bought life insurance and they sent a nurse to my house to verify my identity and take a blood sample. At that time, they were looking for diabetes, AIDs and probably a whole lot more. Today, they might be looking for genetic pre-dispositions. I don’t know, but I do know they have a direct method of obtaining that information and it’s not spending untold hours sifting through someone else’s data that likely isn’t relevant to you anyway.

3. This “research” project was inspired at Whitehead Institute, an affiliate of MIT, a publicly funded institution. When Yaniv Erlich dreamed up this new hacking technique, he said he couldn’t resist trying it, so instead of simply discovering a potential issue and privately and quietly working with the proper people to resolve the issue, he decided to exploit it publicly, obtaining, I suppose, his 15 minutes of fame. So yes, your tax dollars did indeed likely pay for some or all of this “research.”

In one of the articles, Dr. Jeffrey R. Botkin, associate vice president for research integrity at the University of Utah, which collected the genetic information of some research participants whose identities were breached, cautioned about overreacting. “Genetic data from hundreds of thousands of people have been freely available online,” he said, “yet there has not been a single report of someone being illicitly identified.” He added that “it is hard to imagine what would motivate anyone to undertake this sort of privacy attack in the real world.” But he said he had serious concerns about publishing a formula to breach subjects’ privacy. By publishing, he said, the investigators “exacerbate the very risks they are concerned about.”

Well, it’s obvious that these folks at Whitehead institute don’t live in the real world and clearly don’t have enough real scientific research to do.

So, what is the take home of all of this?

You are not at risk of having anything exposed in this incident unless you are one of the 1000 people in the 1000 Genomes Project. If you are part of the 1000 Genomes Project, and male, there is a 12% risk that they figured out your last name and using other tools, possibly who you are, along with your family. If you are related to someone in the 1000 Genomes Project, the researchers might have figured out that you are related to them. So now the risk is that they’ll do what with that information??? Guaranteed, someone will figure out the same information and much more quickly, without your DNA and without government funding if you simply stop paying your bills.

If you participate in a research project, such as the 1000 Genomes Project, where your full results are made publicly available, you sign a release, and that release indicates that your privacy may not be able to be protected. You are aware of the risks before you begin.

We, as a community, have been warned for years not to put information that might be medically informative on the internet, such as full sequence mitochondrial DNA information. Anyone who does so, does it at their own risk. The people in the 1000 Genomes Project knowingly took that risk.

If you stay within the confines of the genealogy and DTC mainstream testing companies, you are fairly well protected. Having said that, reading the consent forms of any of the companies makes it clear that your identity is never entirely protected. We’re genealogists after all. What good is genealogical testing if you can’t contact people you match?

Inferred health risks are not the issue they are being portrayed to be in these articles. Your cousins health risks are not necessarily yours. Genetic inheritance is a complex and individual event.

Insurers who can use health information to restrict or deny insurance are simply going to request a blood sample. They are not going to act like a blood hound on the scent of a rabbit and sort through tons of information for inferences. Why would they when they can obtain the information they seek, directly and much less expensively?

For those researchers involved with information made publicly available, such at the 1000 Genomes Project, this is a wake-up call that perhaps less information available publicly is better. Some information, such as ages and location should perhaps be available only to legitimate researchers, which would still have included the Whitehead Institute people, but would have taken away much of their thunder. I understand this change has already been implemented, but that doesn’t entirely mitigate the issue of genetic data mining publicly available full genomic sequence information for identity, only makes it a little more difficult and less likely to succeed.

I clearly understand why hackers want my bank account information, and why identity thieves want my personal information, but why, in the real world, not at Whitehead institute, would anyone ever spend the time and effort to do this? The motivation for these researchers was clearly to publish, but I can think of no reason other than that or simply “because they could” to spend the time doing something like this. Who would want to and for what purpose?

The sky is not falling

It’s behind a paywall, but you can access the scientific article here that started all of this hubbub.

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Security and Privacy

Posted on January 9, 2013 by Roberta Estes

Did you really mean to say that you didn’t want to see your matches???? Have you accidentally done this?

At Family Tree DNA, you may notice that some of your matches, especially at the 12 marker or HVR1 levels, particularly if you have a lot of matches, may be marked “private” and greyed out, with no contact or other information. What does this mean and why would someone take a DNA test for genealogy, then mark their results as private?

Those are great questions and there are several answers. First, some people don’t realize that the selection they make in their “Account Settings” tab affects how their results are displayed, or not displayed, to their matches. They also don’t realize that it can suppress those matches for them as well.

You can see that for both Y-line and mitochondrial DNA, you can disable matches and e-mail notification. This means that you won’t receive match notifications for 12 marker matches, if you disable that level, nor will any of your information be shown to your matches. Furthermore, you won’t see those matches either. They will not appear on your match list. In fact, you won’t have a match list for the level you disable.

Some people only test at 12 markers, for example, so if you disable 12 marker matches, be absolutely sure that you really don’t want to be notified if you match someone with the same surname at 12 markers that did not test at a higher level. If you disable these notifications and matches, this is what your matches will see:

As you can see, your match will be able to see your surname only, how many mutations difference there is between you and them, no “most distant ancestor,” no haplogroup information and more importantly, no way to contact you. This is typically not what people mean to do, but this is the result.

In one case, a man was distraught because he had no matches, but had disabled matches at all levels of testing, so of course, none showed. He had matches, he just couldn’t see them and he didn’t notice the message that said he had disabled matching at that level. He thought that the only function he had disabled was the e-mail match messages, but that wasn’t the case. It’s all or nothing at each level. You can’t disable the messages without disabling the matches too.

There are other security options you can select as well. Some, are found under “Personal Profile” settings, others under “Account Settings,” and finally, a beneficiary designation in case something should happen to you. This is the only person that Family Tree DNA will allow to access your account. Please take a little time to click through these options so that you personalize your experience in such a way that best fits your testing goals.

Aside from your matches and project displays, the only other people who can see your information are the volunteer group administrators of the groups you join. You can control, by your selections, how much they can view. There are several items they can view, but not change, such as your e-mail address, for example. Group administrators have a set of guidelines that they must follow.

In the case of mitochondrial DNA, if you have tested at the full sequence level, the project administrators of haplogroup projects cannot see your full sequence level which is necessary to categorize your results into subgroups unless you specifically change your setting to allow them to view your mitochondrial full sequence results. This is found under “Account Settings” then “Results Display Settings.” Change the answer to yes for the appropriate projects.

The key, of course, to privacy and security is to have as much privacy as you wish, without actually hurting your chances of making genealogical connections, and contacts, which is, after all, the entire reason that you tested in the first place.

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