Testing others’ DNA
The Legal Genealogist has said it before and will say it again… and again… and again…
The hallmark of ethical genealogy is the utmost respect for the privacy of living people and the disclosure of information about living people only with their consent.1
As with all of our research that discloses information about living people, the hallmark of ethical DNA testing is informed consent. It’s an ethical imperative for us as genealogists using genetic evidence in our research that we never ever sneak a DNA sample from someone who refuses to undergo testing2 — we test and we ask our cousins to test only with informed consent.
We and our cousins all have to know (or at least have the opportunity to know) in advance what the test results may be used for.
In this context, informed consent has so many components, and a test taker must understand that:
• “DNA test results, like traditional genealogical records, can reveal unexpected information about the tester and his or her immediate family, ancestors, and/or descendants. For example, both DNA test results and traditional genealogical records can reveal misattributed parentage, adoption, health information, previously unknown family members, and errors in well-researched family trees, among other unexpected outcomes.”3
• “DNA tests may have medical implications.”4
• “…complete anonymity of DNA tests results can never be guaranteed.”5
• “…once DNA test results are made publicly available, they can be freely accessed, copied, and analyzed by a third party without permission.”6
These last two points are particularly important now, in light of the ethical concerns over the efforts of law enforcement to use genealogical databases for investigative purposes.7
And there are other considerations as well since, when we ask our cousins to test, it’s because we want to be able to use their results — to speak, to publish, to share with other cousins. We need informed consent for any and all of those.
So… how do we, as genealogists who often ask our cousins — or suspected cousins — to test, ensure that they have that opportunity to know in advance what the test results may be used for? How can we do our part to make sure that when that cousin says yes, it’s with informed consent?
Bottom line: ask for consent — and get the answer — in writing.
And for those who’ve never thought to get this sort of thing in writing and feel they might not have a clue where to start, help is here.
Two of the leading experts in the use of genetic evidence in genealogy have made informed consent templates available under what’s called Creative Commons licensing — in this, the CC Attribution 4.0 International License. Under that license, we’re all allowed to freely use and share and even change the templates, even if we use them commercially, but we have to give attribution, link to the license and indicate if we made any changes.
Blaine T. Bettinger, who blogs as The Genetic Genealogist and is the author of The Family Tree Guide to DNA Testing and Genetic Genealogy,8 and Debbie Parker Wayne, another blogger (Deb’s Delvings in Genealogy )and co-author with Blaine of Genetic Genealogy in Practice,9 have kindly made sample templates available to us.
These are on an as-is basis. They’re not legal advice. If you use them, you need to carefully consider whether they meet all your needs. That being said, the following are a great place to start:
• Informed Consent Agreement (Bettinger)
• Consent Form for a Project (Wayne)
• Consent Form for a Family Member (Wayne)
• Beneficiary Designation Form (Bettinger)
Each of these asks, specifically, that the test taker read, review and agree to the Genetic Genealogy Standards put forth by some of the best and brightest in this field.
A great place to start to ensure that, when we ask, everyone knows what could happen with DNA testing.
In other words, that we all have informed consent.
SOURCES
- See Judy G. Russell, “The bull in the DNA china shop,” The Legal Genealogist, posted 29 Apr 2018 (https://www.legalgenealogist.com/blog : accessed 6 May 2018). ↩
- ¶ 2, Genetic Genealogy Standards, PDF, GeneticGenealogyStandards.com (http://www.geneticgenealogystandards.com/ : accessed 6 May 2018). ↩
- Ibid., ¶ 12. ↩
- Ibid., ¶ 10. ↩
- Ibid., ¶ 6. ↩
- Ibid., ¶ 7. ↩
- See generally Judy G. Russell, “The bull in the DNA china shop,” posted 29 Apr 2018. ↩
- Blaine T. Bettinger, The Family Tree Guide to DNA Testing and Genetic Genealogy (Cincinnati, Ohio: Family Tree Books, 2016). ↩
- Blaine T. Bettinger and Debbie Parker Wayne, Genetic Genealogy in Practice (Arlington, Va.: NGS, 2016). ↩
This is a great post. Thank you for providing this information.
Thanks, Judy! This is very helpful. As a general rule (not legal advice), do you see any added benefit in having these documents notarized whenever possible? Also, has there been any progress toward the establishment of a “DNA Bank,” as we discussed last year?
This touches on a question that I have on my horizon. I have just started in Genetic Genealogy — sent my sample in the day of this post. After I get my results and get a handle on the way this all works I want to branch out to relatives. The priorities, for reasons you’ve mentioned here, are the older relatives.
My aunt uncle and my wife’s aunt are in their eighties and, I believe, fully capable of making an informed decision. My wife’s father is another story. He is ninety years old and has significant cognitive impairment. He might sign a form like this, but I would not be sure that he fully understood all the implications. It is also possible that he wouldn’t remember it a day later, or give different answers on different days.
What should be my correct stance on this?
Thank you.
This file is not accessible:
Beneficiary Designation Form (Bettinger)
Fixed — try again please.
In re: Blaine’s beneficiary form, what happens to my DNA, results, etc., when my beneficiary dies? Do I need to do some kind of a form to govern it in perpetuity? Is that even possible?
What you can do is name a contingent beneficiary (including the administrator of a project, without identifying the administrator, so whoever is the administrator becomes the beneficiary).
Judy, my comment / question of May 6 above sorta pertains to Martha Watson’s concern. Is there any hope that NGS or a similar organization may set up a “DNA bank” so that those of us whose DNA is not part of a project (or covers multiple projects) can leave our kit to a stable organization rather than to an individual or a project that may not survive over the long term?
I have raised the issue, there’s always a “that’s very interesting” response… but I suspect nothing will be done until some one individual decides to spearhead the effort.