I have a dilemma. I would love the information theoretically available from a medical and genealogy DNA test, however I am unwilling to voluntarily give up the genetic material to have it done.*
But, does that really matter?
All it takes is a sibling, a parent, an aunt, a cousin to have given up their own, and I am now effectively in the database anyway.
In spite of my reluctance to give up my own DNA for a database, genetic genealogy absolutely fascinates me. Indeed, I am a member of the International Society of Genetic Genealogy. As someone who has helped adoptees find birth parents, I love the possibilities of the tool. It’s exhilarating to track down and solve family history mysteries and to help people find information they have long sought.
However, I have some very large privacy concerns.
In spite of the existence of the Genetic Information Nondiscrimination Act (2008), if you read the Terms of Service on the various websites, it quickly becomes clear that the services will be doing pretty much whatever they want to do with your most intimate, fundamental information. It would become difficult to track any alleged discrimination back to the test.
Genetic Information you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others.
In a following section, however, it goes on to explicitly state:
Further, you acknowledge and agree that 23andMe is free to preserve and disclose any and all Personal Information to law enforcement agencies or others if required to do so by law or in the good faith belief that such preservation or disclosure is reasonably necessary to: (a) comply with legal process (such as a judicial proceeding, court order, or government inquiry) or obligations that 23andMe may owe pursuant to ethical and other professional rules, laws, and regulations; (b) enforce the 23andMe TOS; (c) respond to claims that any content violates the rights of third parties; or (d) protect the rights, property, or personal safety of 23andMe, its employees, its users, its clients, and the public. In such event we will notify you through the contact information you have provided to us in advance, unless doing so would violate the law or a court order.
Of course, everyone here expects that various government agencies have access, or could at any time in the future obtain access, to your information in “private” DNA databases.
I’m sure most of you are aware that law enforcement agencies are already routinely using public genealogy databases to find matches to DNA collected in criminal cases. One of the most prominent examples was the Golden State Killer case.
Within five minutes of reviewing the results, the investigators had located a close relative among the million or so profiles in the database.
Within three years, the DNA of nearly every American of Northern European descent — the primary users of the site — will be identifiable through cousins in GEDmatch’s database according to a study published on Thursday in the journal Science.
This is huge for adoptees seeking birth families, as well as actual kidnapped persons, as in this fascinating and informative case. Of course, I am of two minds about being able to track down birth parents. People who gave up a child while being promised privacy and, perhaps, anonymity have a reasonable expectation that this will persist.
However, I also believe that people have a right to know who they are and from whence they came, and the genetic medical tendencies and/or conditions they may have inherited. There are many cases where having this information has potentially saved lives, in birth families and for adoptees.
How do we balance these competing needs? I don’t know.
What I do know is that the genie is out of the bottle and there is no putting it back in, so I fervently hope society figures out how to manage this. I remain skeptical.
To learn more about this topic, I highly recommend accessing the free resources on the wiki of the International Society of Genetic Genealogy.
* There are various methods available to try to accomplish this anonymously, one of which is simply to buy the kit commercially in a location remote from one’s home with cash and then follow the other suggestions to access the results. So far, it is more trouble than it is worth to me, since there are very few family history questions I haven’t answered in taking my own family lines back 200+ years, and in some cases, far more.