Think about the ethical rules
It’s holiday sale time at the DNA companies, with price breaks on DNA testing kits already underway or soon to begin at most of the testing companies.
And with the substantial dropoff in the rate of growth of DNA testing in the genealogical community since the disclosure last year that the third-party tools site GEDmatch had allowed use of its database by police investigators,1 it’s a sure bet the sales prices will be attractive and the sales pushes … well … pushy.
Now — like everyone else — The Legal Genealogist loves a good sale.
But before we rush out and buy those DNA test kits to hand out to kith and kin this holiday season, we as genealogists have to do one more thing.
We need to think — in advance — about the ethical rules of DNA testing.
We need to consider just how we ask those kith and kin to test — what we need to tell them, what they need to know.
In other words, we need to focus on making sure that every single person who tests gives informed consent to that testing.
By definition, informed consent is “an agreement to do something or to allow something to happen, made with complete knowledge of all relevant facts, such as the risks involved or any available alternatives.” 2
So… in the context of these tests, what exactly does that mean?
At a minimum, before we test and before we ask others to test, every single person who tests needs to understanding clearly that:
• “DNA test results … 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
• “…[C]omplete anonymity of DNA tests results can never be guaranteed.”5
• “…[O]nce DNA test results are made publicly available, they can be freely accessed, copied, and analyzed by a third party without permission.”6
The Genealogist’s Code of Ethics, promulgated by the Board for Certification of Genealogists, puts it this way:
To protect people who provide DNA samples
When seeking data from a living person for genealogical research purposes, I will explain how I would use and share the data and the benefits of that use and sharing.
I will explain risks and consequences, such as uncovering unanticipated relatives, medical implications, unexpected ethnic backgrounds, and intentional misinformation about such situations.
I will explain options for openness and privacy and how other researchers could or could not access the data.
I will explain there are never any guarantees of complete anonymity and privacy.
After providing that information, I will request and comply with the signed consent, freely given by the person providing the DNA sample or that person’s guardian or legal representative.7
Now… does telling people all of this mean some people won’t test? Yes.
Is it still the right thing to do? Yes.
We don’t get an ethical pass simply because we want that DNA result to help with a genealogical brickwall.
Before we buy that test kit this holiday season, we need to stop and think about the ethical rules of DNA testing, and make sure that we’re acting in accordance with those rules.
Cite/link to this post: Judy G. Russell, “Before we buy that kit…,” The Legal Genealogist (https://www.legalgenealogist.com/blog : posted 8 Dec 2019).
- Leah Larkin, “Genealogical Database Growth Slows,” The DNA Geek, posted 22 June 2019 (https://thednageek.com/ : accessed 8 Dec 2019). ↩
- Wex, Legal Information Institute, Cornell Law School (https://www.law.cornell.edu/wex : accessed 8 Dec 2019), “informed consent.” ↩
- ¶ 12, Genetic Genealogy Standards (https://www.geneticgenealogystandards.com/ : accessed 8 Dec 2019). ↩
- Ibid., ¶ 10. ↩
- Ibid., ¶ 6. ↩
- Ibid., ¶ 7. ↩
- Genealogist’s Code of Ethics, Board for Certification of Genealogists (https://bcgcertification.org/ : accessed 8 Dec 2019). ↩