This week in Vox, health reporter Julia Belluz (Twitter) wrote about genetic genealogy testing in “Genetic testing brings families together: And sometimes tears them apart.” The article focuses largely on testing company 23andMe, and presents the following thesis:
Direct-to-consumer DNA testing companies are revealing family secrets, many of which are emotionally damaging, without regard to those affected by the family secrets and without sufficient warning to the test-taker.
Unfortunately, rather than presenting a balanced view of the consequences of uncovering family secrets using DNA testing (and despite the title of the article), Belluz focuses only on examples of negative outcomes. The article is a perfect demonstration of “genetic exceptionalism,” the theory that genetic information is special and must therefore be treated differently from other types of information. Despite its many adherents, genetic exceptionalism is a theory without a logical underpinning.
Outcomes of DNA Testing
There can be no question or debate that genetic genealogy reveals family secrets both recent and old. Indeed, many tens of thousands of genetic genealogy customers purchase DNA testing for exactly that reason, in hopes of discovering the truth behind their own family secret. Many other thousands of customers of DNA testing learn about family secrets that they never knew existed.
There can also be no question or debate that some people will be thrilled to learn the truth about their family secret, while others will be devastated. Although there is debate about the ratio of “happy events” to “sad events” (with most sources contending that happy vastly outweighs sad), it’s not clear that the ratio really matters to this discussion. I contend that few people would change their opinion even if presented with concrete evidence of a ratio significantly different than the one they predict.
And lastly, there can be no question or debate that DNA testing can reveal information about a test-taker’s close family members.
It seems, therefore, that the following questions remain:
- Is DNA unique or different in its ability to reveal family secrets?
- Should the revelation of family secrets by DNA testing be prevented or controlled in a manner different than it is now?
The answers to these questions matter, and inform everything discussed in Belluz’s article.
Is DNA Unique or Different in its Ability to Reveal Family Secrets?
Throughout time there have been family secrets. Adoption, misattributed parentage, infidelity, and many others. While it was easier to hide family secrets during most of human history, the invention of written records and other technological advances have made it much more challenging.
Traditional Genealogical Research
DNA testing, however, is just another tool for revealing family secrets. For decades before DNA testing, written records contained and revealed information about family secrets. Almost every kind of written record can reveal a family secret, including census records, vital records, church records, wills and probate records, and many, many more. For example:
- Census records, available 72 years after they are taken, reveal all manner of hidden family relationships;
- Vital records such as birth certificates reveal that birth parents were not who we thought they were;
- Will and probate records reveal the existence of heirs no one knew about;
- And so many, many more.
These are not hypothetical situations; they are actual examples of revelations that have been made over and over again. Indeed, there are hundreds of stories (and many books) about the use of traditional genealogical research to discover and/or solve family secrets:
- “Siblings find one another after 47 years”
- “York Region twins meet brother they never knew”
- “Family Secrets: Is There a Skeleton in Your Closet?”
- “Census from 1900 reveals family secret”
- “No Longer a Secret: Uncovering My Family’s Russian Jewish Heritage”
None of the revelations in these articles was the result of DNA testing. So DNA clearly does not have a monopoly on revealing family secrets. In fact, there’s no evidence that it’s any better than traditional research at revealing family secrets.
Opening Adoption Records
In addition to traditional records used for genealogical research, adoptees have been pushing for access to their adoption records. These records, perhaps more than any other, contain direct evidence of family secrets.
In 2010, for example, the state of Illinois passed a law giving adoptees over the age of 21 the right to request a copy of their original birth certificate. (See “Adoptees praise birth certificate statute for revealing family history.”). Since the law went into effect, the state has issued more than 10,000 birth certificates to adult adoptees. In addition to Illinois, other states have enacted or are considering enacting similar laws.
Surely these laws have revealed several thousands of family secrets that have affected thousands of family members. Once again we see definitive proof that DNA does not have a monopoly on revealing family secrets.
The problem is that you cannot logically object to DNA testing because it reveals family secrets without also objecting to all forms of traditional genealogical research, as well as any law that opens records to adoptees. Objecting to just one category without objecting to all is completely illogical, as they all have the same potential to reveal family secrets. DNA is just one of the many different types of records that reveal family secrets.
Revealing My Own Family Secret with Census Records
The first hint that my great-grandmother Marley was adopted came from a census record in which the 3-year-old is living with a couple both over the age of 60. It is a biological certainty that the woman she is living with is not her biological mother. Thus, the 1892 NY census revealed to me a 125-year-old family secret.
The fact that Marley’s birth occurred so long ago does not mean that this family secret is an abstract concept; I distinctly remember meeting my great-grandmother as a child. To me she was a living, breathing person.
By my last count, Marley has more than 60 living descendants, every single one of whom are affected by this family secret.
Should my access to the 1892 census have been limited? Why did no one warn me before I reviewed the record? Why did I not have to click a box warning me about the dangers of traditional genealogical research?
If you believe my access to DNA should come with a warning, how can you logically not believe that my access to every other genealogical record should come with a warning? Genetic exceptionalism is inherently illogical.
Should the revelation of family secrets by DNA testing be prevented or controlled?
In the article Belluz makes the implication that the revelation of family secrets by DNA should be limited in some way, such as the use of a more extensive alert or warning system (Earlier in the article she writes, for example, that “[w]ith services like 23andMe, whether people realize it or not, keeping such family secrets may soon no longer be an option.”).
For example, she ends the article with the following quote from Professor Sheila Jasanoff, who earlier in the article discusses 23andMe’s alert system:
As the market grows and more and more people log in, services like 23andMe may well become the Google of our personal genetics. Except instead of acting as the gatekeeper for a search query on how to cook a steak, they will be the guardians of our collective DNA. With quiet changes to their privacy settings, the company is already determining whether and how we have family secrets revealed and how we learn about our histories. It’s already controlling the narrative of our genes.
This worries critics like Jasanoff. “It may be statistically true that there are more ‘happy’ events than ‘sad’ events as a result of such information being made available. But do we really want a private company to decide that it wants us all to have a certain kind of experience with our DNA because the sad events are in a minority?”
The confusing ending that Belluz chose contradicts the implication throughout the remainder of the article that we should not be allowed such broad access to family secrets via DNA. Ironically, because of the controls it has in place in an effort to protect the privacy of test-takers and their families, 23andMe exerts more control over a test-taker’s experience than other testing companies; it continues to control the narrative of our genes.
To truly avoid 23andMe or any other company from forcing us “to have a certain kind of experience with our DNA,” per Jasanoff’s concerns, it would seem that the answer is to remove these privacy limitations. As Jasanoff’s comments seem to support (although certainly Belluz did not intend to support this notion), there should either be no access to DNA testing or unfettered access to one’s DNA test results. Anything on the spectrum between these two options is exactly the type of control to which Jasanoff expressed concern. Not surprisingly, it’s a concern I have as well; no one else should decide for me how much of my DNA test results I get to see.
While I believe that I should have unfettered access to my DNA test results (which would include a list of all the genetic matches who entered themselves in the testing database), some certainly believe that there should be no access to DNA testing. However, if you believe that there should be no access to DNA testing, you must logically also believe that there should be no access to any other type of genealogical record, or to adoption records. Choosing just DNA as a target without also choosing the others means that you subscribe to genetic exceptionalism, a logically failed theory; as I’ve established above, DNA is neither unique nor different in its ability to reveal family secrets.
Educating the Consumer
That isn’t to say, of course, that the consumer shouldn’t be educated. In fact, I have said since 2007 when I started this blog that education is the answer to all the problems facing DNA testing. Consumers should be educated about the possible outcomes of DNA testing, including the inadvertent revelation of family secrets. All the genetic genealogy testing companies provide this information to the consumer, although it may be buried in the terms and conditions. Making this information more prominent and available is part of the solution to the concerns voiced in the article.
I note, however, that no testing company can be made completely responsible for ensuring the education of a consumer. No one can force any consumer to learn something; you can only give them access to the tools to learn. Indeed, even very learned scholars who have absolutely no excuse for failing to understand the full implications of DNA testing choose to ignore the information that is presented to them (see the embarrassing and overly dramatic account of a Ph.D. in “With genetic testing, I gave my parents the gift of divorce.”).
Although Belluz’s article has certainly “educated” many consumers, it failed to do so in a balanced and unbiased manner. Rather than provide access to resources for more information, or highlight both success and disappointment, the article focuses only on anecdotal evidence of unhappiness. This was yet another failed opportunity to educate consumers in an appropriate manner.
23andMe’s Privacy Settings
One of the focal points of Belluz’s article is the recent decision by 23andMe to automatically show consumers their very close relationships. Previously, consumers had to opt into the service. Clearly Belluz did not support this move, as she wrote that the change would mean that “anyone who signs up for 23andMe could now make an accidental discovery with no warning at all.”
Once again, this move would have moved the company closer to an agnostic approach to controlling access to DNA test results, addressing Jasanoff’s concerns about forcing consumers “to have a certain kind of experience with our DNA.”
Unfortunately, on Friday 23andMe decided to postpone – and possibly not implement – the change to the opt-in service. Their announcement is vague, but states that the company needs additional time to evaluate the consent options related to the DNA Relatives service. The decision is probably not the result of any single article, but is likely an attempt to avoid more articles like this one.
It would appear that the genetic exceptionalists, proponents of an entirely illogical theory, have scored a solid – but almost certainly temporary – victory.
Hear, hear, Blaine! Great summary, coverage and solid reasoning! (Of course that shouldn’t be any big surprise to any of your readers.)
Thank you so much!
Thank you CeCe! I’m so glad you enjoyed the article, and thank you for the kind words.
Thank you so much for your response to the ridiculous and heavily biased article published earlier this week.
Thank you so much Angie! The more I read the article, the more problems I find with it.
Well obviously this is too important to leave to corporations and individuals. The government has to conduct all this research and in its infinite wisdom decide what may be released to the people – disqualifying anything that might make someone uncomfortable.
Yes Israel, we’re far too dim to decide our own fate! Thanks for reading and commenting, I always enjoy hearing from you!
No lie lives forever. DNA is only one more way to discover the truth. That some wish to keep secrets about their deeds, does not trump the right of a human being to know his or her origin.
I too believe that we have a right to our own history!
The truth is always the truth. No one can dispute it. It is the truth. Surprises are always a possibility, but no one can deny the truth.
When the truth was hidden, the a lie was alive.
I agree Mary, it often feels like the truth wants to find its way to the surface, whether it be through traditional records or through DNA.
Excellent commentary on an article which, once again, left out the element of personal responsibilty and being educated. Also, thank you Blaine for using the term “misatributed parentage” rather than the puzzling expression non-parental event.
Charmaine – thank you for the kind words! I’ve been trying to use “misattributed parentage” more often, as I realize that it covers more scenarios than the old NPE term.
Thank you Blaine for an excellent post which is full of common sense. DNA is just one of the many different types of record used in genealogical research and it shouldn’t be treated any differently. However, I do think that the increasing availability of DNA records and online genealogical records is creating some potentially difficult situations. While such research will inevitably uncover historical family secrets there is a need to treat family secrets within living memory more sensitively, and it is important to respect the needs and wishes of the individual. There is also the need to operate within the confines of existing data protection legislation. For example, in Europe there is now the new “right to be forgotten”. There are some interesting ethical challenges ahead of us.
Thank you Debbie! I agree completely, it is the incredible access to both traditional records and DNA that is bringing family secrets to the forefront. It will be interesting to see how we deal with these challenges.
Excellent response, CeCe! Thanks for explaining the logical implications that lie behind the emotional rhetorical in such a clear and concise manner.
Sorry–thanks to Blaine for the article and CeCe for sending it to my mailbox.
Thank you Linda! Deconstructing genetic exceptionalism really requires a rather simple, but organized and logical, approach.
Very well argued! For years, when people have asked me to do genealogy work for them, I have always started off with the warning that it might dig up family secrets and that once they are known, they can never be unknown. None of the secrets I have found had anything to do with DNA, just simple research. From a protection/privacy/secret standpoint, I would think that decisions such as the Illinois one would cause far more secrets to be revealed.
Sharon – I agree completely, the Illinois law must have had a HUGE impact, yet I haven’t heard anything about that in the media. What hoops do adoptees in Illinois have to go through to get their results? Do they have to sign an informed consent document I wonder? It’s an interesting comparison.
The documentary “A Simple Piece of Paper” does a nice job providing insight to the various possibilities when receiving a copy of ones original birth certificate. Like this article describes about DNA test results, the outcomes vary between both ends of the emotional spectrum. I got mine a couple of years ago. I had to fill out a couple of forms and include some documentation.
Thanks Blaine! The other article did make me pause for a minute, but I love your response!
Thank you, I’m so glad you enjoyed the article!
Great response to a ridiculous article.
I was so upset by the comment: “The truth sometimes doesn’t need to be known,” he said. “The fact that you live your life thinking that somebody is your parent and they turn out not to be and they were cuckolded or they knew and didn’t tell you. … There is a case to be made for the fact that sometimes that stuff is just best to be left alone.”
Why on Earth would the truth not need to be known or best be left alone? How does that help anyone? Everyone deserves to know where they came from and know “their” truth. Thanks for the article.
Thank you Julie! I too believe that everyone has a right to know where they came from. While I also believe that people should be aware before testing that they may learn that where they thought they came from isn’t where they actually came from, I don’t believe that should prevent people from having access to their test results.
I agree with Blaine more good than bad comes out of the truth. I have solved several two family mystery’s one from census records,one from DNA. I want all the tools I can get.
So true, family secrets are revealed regardless of the tools involved!
What an awesome article. I certainly appreciate the time and effort you put into it. 23andMe needs a new direction!
Thank you Richard, I’m glad you enjoyed the article!
Thank you. I am a perfect example of ‘hidden’ secrets. My biological father was never really part of life, starting before I was even born. However I do know that he married and has a child (now an adult herself). He choose NOT to reveal
my existence to his wife (even though I was conceived before he started that relationship). I know about him but his family doesn’t know about me. I have been tested by 23&me because I am a family tree/geneology geek. It’s possible I’ll encounter a paternal relative in their database and his ‘secret’ will be disclosed. But how is that 23&me’s fault? My biological father decided to take a risk when he decided not to tell his wife he’d conceived a child in the past. It’s his responsibility if my existence is revealed.
Thank you for sharing your story! As you know, traditional records such as a birth certificate can reveal your existence to your biological father’s family just as well as DNA can!
Thanks for a well reasoned response. I too was struck by the fact that Ancestry and FTDNA just give you the new matches with (oh dear me) no warning at all. But they weren’t mentioned.
Don’t want to know about close relative matches? Don’t take the test. And don’t let your cousins take the test either.
Although of course you can’t prevent your cousins from taking a DNA test, you also can’t prevent your cousins from researching the census, ordering birth certificates, or reviewing land records.
Yes, but you can prevent your cousins from viewing the sealed adoption records of the child you gave up for adoption. And, under the Illinois law you cite, a birth mother can also request that her identifying information not be released to her surrendered child. Sometimes those records are sealed for very good reasons (i.e. rape, incest, toxic families). This gives the mother the option of protecting her child, if she feels this is in her child’s best interest.
23andMe is effectively unsealing these records to extended family members without the consent of the mother. This is different from the existing laws and protections. If you do not believe in genetic exceptionalism, then shouldn’t there be a mechanism for people to protect their privacy?
Great questions, thank you for taking the time to comment. I enjoy discussing this with someone who clearly understands all the nuances involved.
I agree that the reasons you cite are good ones for sealing records, although I also believe that if the child eventually wants to see the records, he or she should be able to do so. A biological parent should not be able to prevent a child from discovering their heritage, no matter the reason.
My concern with a mechanism for people to protect their privacy is that it overrides the individual’s rights. If a parent can block a child from learning the truth about their heritage, that automatically overrides the child’s rights regardless of the ‘merits’ of the parent’s concerns. If my cousin gave up a child for adoption, that cousin should not be able to prevent me from undergoing genetic testing.
But I think this is the heart of the disagreement; some people believe a parent should be able to retain that genetic privacy regardless of the child’s wishes, and other people believe that a child should be able to overrule the parent’s genetic privacy regardless of the parent’s wishes. I’m not sure there’s any reconciling those two sides; I think everyone falls on one side or the other, and I don’t know if there’s a solution that satisfies both sides.
Further, I’m concerned that genetic privacy is essentially impossible unless you stop all genetic testing. We don’t need close relatives to uncover biological parents; often even distant cousins can do the job. How then would we prevent the revelation of family secrets without preventing all genetic testing?
For me, the answer is informed testing; test-takers should know the possible outcomes before they buy the test. However, I also don’t believe that companies should shoulder all the responsibility. Test-takers are just as responsible for their purchase – including the ramifications of the test – as the company. While it’s true that genetic testing certainly affects people that never purchase a test, there is no mechanism to prevent that without preventing all genetic testing.
Out of curiousity, how would you respond to my point about traditional genealogical records? Why is no one concerned about a mechanism for people to prevent people from studying census records, land records, probate records, etc.?
My views on this are evolving but I would say that there are people who do and do not have a reasonable expectation of privacy. People cannot expect secrets that are a matter of public record to remain hidden (despite the Spanish ruling against google). A man who abandons his child for the sake of expediency by just not being present does not have any expectation of privacy, and he is not protected in any way by the law now.
But there are birth parents who have structured their entire lives around this expectation, and that privacy has been enshrined in the law. I understand your argument about an absolute right to know your genetic heritage, but is that the law anywhere? It seems that there is more of a consensus that the parent’s right to privacy supersedes this.
It is a complex question but I have not seen 23andMe as a particularly thoughtful company on this or other issues related to their generating negative externals of one type or another. It does worry me that their business product appropriates the power to waive the privacy rights of birth parents. Their consideration of these issues seems haphazard.
The copies of the original birth certificate obtained via the IL law does not guarantee that any names are on it. There is one aspect that DNA testing provides that may have been unanticipated when adoption records were sealed – a power shift in the “relationship”. It moves from a position of complete absense of information and powerlessness by the adopted person to one of where the party requesting anonymity is no longer in complete control. An adopted person (any person) has a right to know where they come from. They also need to be aware of the possible impacts this information may have. As an adopted person (who obtained their original IL birth certificate), and an adoptive parent, this opportunity to understand more is liberating, confounding, and fascinating, but also requires significant responsibility and sensitivity. I find it hard to imagine that any adopted person hasn’t contemplated the nature of their conception and is taking a DNA test with naïveté. But their capacity to handle the news, whether wonderful or not, is not any more different than hearing your doctor tell you that you have cancer, or something benign, or completely well. It’s part of life. For the adopted adult person, I wonder where the protection is being directed – towards the adopted person or the party who bears responsibility? My rights should not be overruled due to circumstances that I had no responsibility in creating. I suspect that the preference towards open adoptions is, in part, meant to level the power structure inerrant in sealed adoptions. Regardless, I cannot and would not compel my birth mother to divulge information she is unwilling to share. But knowing where I come from and hopefully some medical history seems like a basic human right to me.
Great article! Count me as one who found the answer to a 55 year old mystery through 23andme. My “new” brothers, and I are thankful for DNA testing!
That’s great David, congratulations!
Thank you, Blaine!
Blaine, I adjusted my own piece to reflect what you wrote, and you did emphasize the positive in a way that slipped my mind. But you miss the fact that critters like the author of that Vox article aren’t as inconsistent as you make them out to be. In fact, people like this are typically staunchly morally opposed to anyone at all being allowed to find out by any method, anything their own parents didn’t see fit to tell them. The world is full of such people. They are sometimes even found in genealogical forums.
Thank you for sharing the link to your piece Dora, I hadn’t seen that yet. By the way, we should connect sometime and figure out how we’re genetically related! Ironically, you appear to be related to me through my adopted great-grandmother!
George – your comments have been removed. Please feel free to attack my thoughts and positions, or the testing companies, but attacks on other people are not tolerated in my comments. If you’d like to re-post your comments without the personal attacks, I’d be happy to respond to them.
I think the biologist in the Vox article let his emotions get the best of him.
If the goal is informed consent, the risk should not be exaggerated.
I agree Jason, that part of the article was a bit dramatic, and made no sense in light of the biologist’s understanding of genetics.
George – I was hoping you could join the conversation, but I am disappointed with your updated comment. Did you believe that your latest comment was not an attack on another person just because you removed the name? There is certainly a productive way for you to express your frustration in a logical and courteous manner. I know that my policies prohibiting personal attacks on third parties are restrictive, but as this is my blog – my real estate on the internet – I get to make that call.
Blaine — Your comment: “… this is my blog – my real estate on the internet …” shows you don’t desire a candid conversation about genetic privacy and the way 23andme and its Ambasadors want to make genetic privacy concerns a thing of the past. I am old enough to remember a presidential debate and Ronald Reagan’s famous theatrical line, “I am paying for this microphone”. Blaine you are no Ronald Reagan and your harsh moderation tactics prove such. Your took after Julia Belluz for failing to have a balanced view and you are doing the same here again with me when I express views contrary to you and that ‘other person’. “Unfortunately, rather than presenting a balanced view of the consequences …” I challenge that ‘other Ambassador’ to a debate on genetic privacy. If you don’t want that debate on your real estate, then there are more open minded forums for such debate.
Again, there was a polite way to make your position known, and a way that personally attacked others. In the history of this blog, almost eight years with more than 3,300 comments, I’ve had to remove a comment no more than five times.
23andme starts to get the message on customer privacy per VOX article and appears to reject those debating their “genetic exceptionalism” viewpoints favoring adoptees and those that work with adoptees:
“But, because of concerns raised by the Vox story, the company reversed its decision to make those changes. It is also going to hire a Chief Privacy Officer.”
I wonder if any overly biased 23andme Ambassadors are going to apply or if 23andme is going to screen CPO candidates for privacy genes on chr 17. Or, would that genetic screening conduct violate GINA? http://privacygene.com/?slide=sample-page-2
Vox has an update, see “23andMe reverses its decision to move to more lax privacy settings” at http://www.vox.com/2014/9/16/6226961/23andme-reverses-its-decision-to-move-to-more-lax-privacy-settings
Yet another parent/child reunion due to recent legislation opening adoption records – http://ow.ly/BAaYF via @CBCNews #genealogy
Wow, so glad to see the comments, I read the Vox article and thought it was harsh and biased. It doesn’t take dna to find out family secrets, I have found three that I can think of just through Ancestry.com and documents. The truth is the truth and it finds a way…
As with Real Matches, those playing with Genetic Matches sometimes get burned or burn others. I think we need Federal and State laws to keep Private People and their Private Lives from getting burned.
The wimpy ISOGG group and biased 23andme Ambassadors are not the lot to keep people from getting burned. They are like the foxes guarding the hen house and pretty soon we are all Chicken Mcnuggets.
The real life example in VOX of a Genetic Match leading to divorce is one such example of getting burned.
Another real life example of a Genetic Match by an ‘amateur’ Genetic Genealogist was seen as an egregious violation of privacy leading to a lawsuit and victory by the aggrieved party.
A central theme of this blog posting and other blogs has been about getting better and more autosomal DNA matches on 23andme for a Small Minority of SIGs (Special Interest Groups) such as adoptees – persons with AJ Jewish ancestry – Native American ancestry – African American ancestry etc. And to do that, several 23andme Ambassadors connived and conspired to get 23andme management to open the floodgates on ALL (new and existing) 23andme customers in their database … even though many of these customers never knowingly consented to do so. So to term it another way, the MAJORITY of 23andme customers had to sacrifice ‘their’ Privacy Rights for a MINORITY advocating for SIGs such as adoptees.
Well you can count me as one on the MAJORITY and I am standing up for my Genetic Privacy Rights. Here’s my take on this in regarding privacy and being fair to both sides. Just as the courts in various states don’t wholesale open ALL adoption records … neither should 23andme wholesale open ALL DNA records with putative IBD matches >1cm.
However, if an individual on 23andme comes to me on a one on one basis because we share a common surname or they have credible genealogical records indicating a shared ancestor … I would say let’s talk on a one to one basis … not a one to many basis which is a fishing expedition and raises privacy concerns.
So, I remain committed to expose unsound viewpoints such as the one quoted in the VOX article who said with a smirk while looking down her nose: “There is no genetic privacy anymore, anyways, she smiled.”
Well yes, Virginia: “There is Genetic Privacy and it is real” http://www.youtube.com/watch?v=Aevy8jIBZmM
George – 9 times out of 10, we don’t need DNA to reveal a hidden family secret. I’ve never seen you object to census records, birth records, or adoption records, so in your opinion what is it about DNA that makes it different – more objectionable or concerning – than these other records? I make the argument in the blog post that DNA is no different than these traditional records, and I haven’t yet been convinced otherwise.
Blaine – My somewhat simple and somewhat cryptic answer about DNA (Genetic) evidence importance versus Genealogical evidence importance is that it all depends on the investigation and persons in question … and if they are living or deceased and if living their tolerance for giving up a key component of their Privacy – their Genetic Privacy. That all involves informed consent … versus the confused consent agenda 23andme has been following.
In the case of King Richard III, the mtDNA evidence and the YDNA evidence were the icing on the Cake Body of Genealogical evidence, Archaeological evidence, Literary evidence, Carbon dating evidence, Spinal deformity and bone injury evidence, etc.
A little known amateur historian, John Ashdown Hill, who consulted with me, did a superb job on this until senior officials at the University of Leicester decided unceremoniously and shamefully to paint him out of the picture for their own organization’s glory.
On a gratis basis for some very prominent people, I am involved in African American Genetic Genealogy research. General Privacy and Genetic Privacy is a top concern for many.
In regards to cryptic Census Records for African Americans (enumerated mainly my number only prior to 1870) GD – Geographic Distance, FUS -Family Unit Size, AGE or Age range, GEN – Gender are all important factors as well as discerning the likely heritage of their slave owner and/or slave overseer. Again, DNA is usually the icing on the cake as it with the Jeffersons and Hemings. I wish I could tell you more on one very interesting case … but there are Privacy concerns on everyone of my cases.
I would say that in 9 out every 10 cases I work on or consult on … DNA is the icing on the cake versus Genealogical records being the icing on the cake. If one wants to adhere to the exhaustive GPS standards (Genealogical Proof Standards) they almost always include DNA testing these days for GGs following GPS protocols.
My favorite testing these days is YDNA Full Y Genome testing via FGC – Full Genome Corp. My Wales Discovery Group members have spent over $10,000 in this area including special testing at YSEQ. We could report our findings at ISOGG up to about 1500AD … but I refuse such since ISOGG is a paper kitty in the area of Genetic Privacy.
George – you didn’t address my question, and the point of this blog post, in any way in your comment, so I’ll repeat my question. I’ve never seen you object to census records, birth records, or adoption records, so in your opinion what is it about DNA that makes it different – more objectionable or concerning – than these other records?
Let me provide an example: the parents, grandparents, etc. of most test-takers today can be found in census records. You cannot dispute that census records regularly reveal family secrets. So why aren’t these parents and test-takers entitled to Census Privacy?
Your inability to articulate any real difference between traditional genealogical records and DNA records with regard to their ability to reveal family secrets supports the conclusions of my blog post and severely weakens your argument for the need for “Genetic Privacy.”
Blaine- It is a sad and tangled viewpoint that you have about a carte blanche rejection of Genetic Privacy when it comes to a DTC DNA company and customers such as 23andme.
I think they have stumbled badly here on Consumer Privacy just as they have with their FDA debacle.
Let me give you an example. I predict you and other of your hardcore “No DNA Privacy” have eliminated yourself from contention for the newly announed 23andme Chief Privacy Officer position.
Let me ask you a question about US Census records. Do you think the 72 year rule has something to do with privacy?
https://www.census.gov/history/www/genealogy/decennial_census_records/the_72_year_rule_1.html We all know there are proxies for census records such as digitized telephone directories, city directories, property tax records, ancestry.com etc. But at least our government sees the need for some degrees of privacy … so I wish you would also when it comes to DTC DNA databases.
So here is a partial answer to your question about US Census Records … I think the 72 year rule is just fine. My digging usually goes from about the 5th or 6th generation and on back … I like harder puzzles and deader / more aged corpses.
DNA **is**unique in its ability to reveal family secrets for two reasons. It is indisputable evidence for determining a genetic relative and the test can be repeated.
Non-DNA forms of genealogical sources used to establish a genetic relative are often disputable and subject to much human error because they rely on both the veracity and competence of the parties who give and record information. In addition, the human deception and unintentional error inherent in traditional genealogical sources is more difficult (and sometimes impossible) to detect and correct.
Ironic, it appears the request for genetic privacy has a significant basis in keeping deception secret. The goal appears to protect the “guilty” and “punish” the people who have the unfortunate accident of inheriting genes deemed too sensitive to reveal. I’m not sure that the arbitrary 72-year wait on census records wasn’t made to protect people who would likely be dead and therefore not available to answer difficult questions. That’s just my opinion as a SIG person (adopted), but also someone who is fascinated with genealogy for both my family and my biological heritage. DNA looks to be the only way to get past a number of brick walls, put a family story to rest, confirm other ones, and potentially reveal unanticipated data. I do know in researching my family, things I’ve found have spurred conversations – some of it emotional and long-buried. I see the anticipated DNA results as furthering the research – but in simultaneously in more current and historical ways.
I don’t care what George thinks as he has long made a sport of attacking me, however for the rest of you reading this, the quote he is referring to here was taken completely out of context: “So, I remain committed to expose unsound viewpoints such as the one quoted in the VOX article who said with a smirk while looking down her nose: ‘There is no genetic privacy anymore, anyways, she smiled.'” When discussing this with the “journalist” (and I use that term loosely), I was referring to the fact that in some states anyone can pick up your trash and test the DNA contained on it and that we leave bits of our DNA all over the place just by living. That cannot be contained and, therefore, the idea of “genetic privacy” seems to me a fallacy.
Further, regardless of what Ms. Belluz claims, I was not the driving force behind 23andMe’s decision to opt-in customers to show close relatives nor were my co-ambassadors. We have a list of many suggestions that we have been putting before 23andMe for almost 3 years now and that one was not near the top of the list.
George – in what universe do you think I’d let your most recent comment (submitted 9/22/2014 at 3:57 PM) go through? There are at least two offensive references in that comment.
Is there someone you trust to review your comments before you post them, in order to extract the content from the vitriol and hyperbole? It certainly isn’t unreasonable to believe in greater informed consent, but expressing that belief the way you do is completely unacceptable. You end up alienating readers long before your message can be conveyed.
I gave you many, many chances to make your point known, but this is strike three; you are no longer allowed to comment. I’m certainly not censoring your ideas; look through these comments and you’ll see that I’ve engaged others in reasonable debate without attack.
Blaine, in addition to all the great points you’ve already made, what struck me as particularly absurd was for them to say, “They will be the guardians of our collective DNA. With quiet changes to their privacy settings, the company is already determining whether and how we have family secrets revealed and how we learn about our histories. It’s already controlling the narrative of our genes.” “…Do we really want a private company to decide that it wants us all to have a certain kind of experience with our DNA because the sad events are in a minority?”
Give me a break. They sound as though 23andMe were moving in to control everyone’s DNA! If a person doesn’t like 23andMe’s approach to DNA information, they are perfectly free NOT TO TEST with them, or any other company! And of course there are other alternatives if they do want to test. The way they talk about 23andMe, it’s as if they feel this company will be able to come and take their genetic information, willy-nilly, from under their noses. Do they think they will soon be forced to test by some sinister Big Brother? The feds have been moving rather in the opposite direction, haven’t they?
Bonnie, you said: — “Do they think they will soon be forced to test by some sinister Big Brother? The feds have been moving rather in the opposite direction, haven’t they?”
Bonnie, I advise for a company entering into commercial discussions with a 3 letter fed agency which has a lab in Quantico VA.
Their work in this area on DNA Amplification and potentially using FISA Court powers to access private DNA databases in combination with various other databases including telecom, internet, hospital databases is pretty fascinating.
CODIS is now real old school. http://www.wcvb.com/Report-DNA-At-Mass-General-Confirms-bin-Laden-s-Death/11270440 With new Rapid DNA testing capabilities, and if you get arrested for a simple thing like a traffic accident or DWI, your DNA will be in a government / public database. See: http://www.washingtonpost.com/politics/supreme-court-upholds-maryland-law-says-police-may-take-dna-samples-from-arrestees/2013/06/03/0b619ade-cc5a-11e2-8845-d970ccb04497_story.html
George – finally! Out of everything you’ve written here, the 72-year rule for census records is the first solid piece of support for your argument that there is a need for genetic privacy. However, I note that I was actually talking about census records from 1940 and before, in which there are thousands of family secrets relevant to living people. I’m not sure the arbitrary 72-year wait changes anything.
In any event, it’s clear we have different viewpoints and that we aren’t going to come to any sort of consensus, but unlike most people I think it’s OK for people to have different viewpoints. Thank you for reading and joining the conversation here, and I wish you best of luck. It will be interesting to see how the 23andme issue plays out. It is abundantly clear that the world is moving toward more genetic testing rather than less, and this issue isn’t going to go away quickly.
Your response to the article was well thought out and on the money. I admin a Y-DNA surname project and I have several adoptees in my particular group who match with me. They want to know more about their genetic biology just as I want to learn things as well. What could be discovered could lead to some brick walls coming down.
On the subject of the original article, I assume it was written in its entirety by this Ph.D without any editing by the publisher. One comment of his really stuck out.
“He logged into his account, and Thomas wasn’t showing up at all. I was so confused. We figured out that at the very bottom of your profile, there’s a little box that says “check this box if you want to see close family members in this search program.”
He acted like in his article he didn’t know you could select a box to see close family members yet he must have done it on his kit. Otherwise, how did he get the information to begin with?
So, he knowingly selected the box to see if there were any close relatives and then decided afterwards he didn’t like the info when things went south.
The bottom line, its not the DNA data that broke his family up, it was their emotionality that did so. I would suggest that their marriage was already in dire straights and this was a straw that broke the camels back for their marriage. To me if it was a strong marriage, they would have been able to overcome the revelations.
This Ph.D just has guilt because he uncovered the family secret and it didn’t end up well. It could of very well ended up very positive as it has for many other people who have discovered unknown relatives, even siblings and parents.
I could not agree more that DNA results are not the only means to discover “family secrets,” thus should be treated in the same way as other genealogical research. In my own case, the combination of census records, marriage records, and the Castle Island passenger database, I have deduced that my husband’s grandfather is NOT the son of his presumed father, but the natural child of his mother. She immigrated to America from Pomerania with “Grandfather,” her 18 month old child, and “Great Grandfather” was a native born German-American, who as far as I can determine never travelled abroad. They were married in the same year she arrived, giving her occupation as “wife.” (Solving one question often leads to another!) Having this information harms no one by this time. I look upon it as having a “bonus” family branch to follow, in fact, as “Great-Grandfather’s” family line is also quite interesting.
I helped my adopted cousin find her biological ‘family’, but the question remains: Is her brother a half or full sibling?…she had a sib dna test done with him and Genex Diagnostics sent a report…but we find the results confusing…they gave 15 DNA locus in which 4 sites are identical[ D351358, TPOX, D55818, FGA] , the others vary with half-sib index being less than 1% more…they summarized with combined sibship index full 38.16 probability 97.4%; full index 43.68 probability 97.7%…so can any conclusion be established from this? I greatly enjoyed your response to the articles about the hazards of searching..my cousin is glad she did. Other evidence is strong that they share the same mother, but do they share the same father is her burning question. Appreciate any light you can share…Jerri
oops type…the combined index of 97.7% cited is for half-sibling….Jerri
Nice article. I’ve encountered no shortage of family secrets in my own research, without the aid of DNA — the biggest being that the man my brothers and I were raised believing was our maternal grandfather was actually my mother’s stepfather (her mother’s second husband), a fact I discovered from a family bible after both of my mother’s parents had died. Sadly, my biological grandfather had died 16 years earlier (when I was 20), so my brothers and I never had the chance to know him. My mother had been honoring a promise she made to her parents at the time she married, but she left me to tell my brothers, as it became evident that she would not tell them herself. We were all happy to know the truth, since what I learned about our grandfather explained so much about ourselves. I’ve since discovered a number of secrets involving various branches of my family. People trying to hide family secrets should realize that the truth will eventually come out. In the long run, hiding the truth does more harm than revealing it. Even if I had not been happy to know the truth, I would still have been deeply hurt to know I had been lied to all my life.
On a brighter note, DNA testing recently enabled me to identify the mother of an adoptee who is my second cousin, to send her some old pictures of her grandparents and great grandparents, and to let her know of her living half-sister and numerous first cousins, with whom she hopes to connect. (She had her mother’s name from a hospital record, but the surname was so badly misspelled that she had not had any luck through searching records. I immediately recognized it as a common mistranscription of one of my family names and found her mother in my database.)
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Sometimes people keep secrets they do not want to keep. As you can see on a recent Downton Abbey episode, the young woman who must hide her daughter is being pressured by others to keep secrets, including by a frivolous aunt while her grandmother gets to the bottom of it fast (although she too believes in keeping up a false front). The middle class adopted these aristocratic notions with the American system of closed adoptions. Sometimes the birth mother would just as well liked to have met the adoptive parents, but in the past, before Roe v. Wade gave her bargaining power, the false front was kept very sternly. That it is coming down now through genetics seems only fitting – science cutting through hypocrisy, reality penetrating myth. But new ways must be found to soften the blow, perhaps.
The argument that those who would suppress the genetic record might also wish to suppress written records is interesting, because you can also surmise a lot just from them. My great-grandmother had her first child out of wedlock. Her family objected to the man’s social status and they were never married. I discovered only a few months ago the roots of this 125 year old New England tale of deception (after several years of being contacted at ancestry.com by the descendants of the illegitimate son, who pelted me with questions about her motives for leaving the child with his father). She gave birth in a different city and listed the parents of the child as her own somewhat elderly parents! Then he was given the name of his father and raised by a pair of maiden aunts. The father never married anyone and lived a solitary life (but what if he was gay – something we never take into consideration). New mystery, eh? In fact there’s a lot of gay history too, on the edges. But no genetic test for gayness to reveal secrets of that part of one’s ancestry. My great grandmother finally hit the jackpot on her final marriage (she had one actual husband before and several children by each of her two marriages). He was a man who was brought up on Park Avenue and the son of a Fifth Avenue department store owner. But alas, he became tubercular and the family lost all its money and status by the time my grandfather was growing up. I know however that he knew of his half-brother, because my aunt told me the whole story. Someone reality penetrated in my family and the maternity of the child was acknowledged by all.
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