Testing others’ DNA

The Legal Genealogist has said it before and will say it again… and again… and again…

Informed consentThe 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)

Word 2010 version

PDF version

Consent Form for a Family Member (Wayne)

Word 2010 version

PDF version

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

  1. 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. ¶ 2, Genetic Genealogy Standards, PDF, GeneticGenealogyStandards.com (http://www.geneticgenealogystandards.com/ : accessed 6 May 2018).
  3. Ibid., ¶ 12.
  4. Ibid., ¶ 10.
  5. Ibid., ¶ 6.
  6. Ibid., ¶ 7.
  7. See generally Judy G. Russell, “The bull in the DNA china shop,” posted 29 Apr 2018.
  8. Blaine T. Bettinger, The Family Tree Guide to DNA Testing and Genetic Genealogy (Cincinnati, Ohio: Family Tree Books, 2016).
  9. Blaine T. Bettinger and Debbie Parker Wayne, Genetic Genealogy in Practice (Arlington, Va.: NGS, 2016).
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