Think DNA ethics
‘Tis the season to be jolly… and to give gifts to family members and friends.
For those who, like The Legal Genealogist, are fans of genetic genealogy, that may mean thinking about buying and giving DNA test kits to kith and kin this holiday season.
Not so fast.
There are some things to think about when it comes to DNA testing and it’s best to think about them before spending the money on the test kit.
There are both legal and ethical issues that can come up with respect to DNA testing that should be considered in advance.
First, can you legally and ethically test the person you’re buying the kit for?
This really is a serious question for those who are considering tests for the very oldest and very youngest members of the family: those who may not be in a position to consent to the test.
Some of our very oldest family members may not be competent, mentally, to consent, due to Alzheimer’s or other age- or disease-related issues.
And our very youngest family members aren’t legally competent to consent because of age: the minimum age for legal consent in the United States is still 18 years.
From a legal perspective, we have to remember that every testing company requires an express representation that the person submitting the test has the legal authority to consent to the testing:
• 23andMe requires that each person who submits a sample affirmatively indicate that “it is your own saliva sample (or) a saliva sample for anyone for whom you have legal authority to agree.”1
• AncestryDNA requires that “you represent that any sample you submit is either your DNA or the DNA of a person for whom you are a legal guardian or have obtained legal authorization to provide their DNA to AncestryDNA.”2
• Family Tree DNA requires the full consent of the person tested and a release form signed by the person or that person’s legal representative.3
• MyHeritage requires that the person submitting the sample represent that “any DNA sample you provide and any information that you transfer or upload that associates an individual with his/her DNA Results are either your DNA or the DNA of a person for whom you are a legal guardian or have obtained legal authorization to provide their DNA to us.”4
• National Geographic’s Geno 2.0 project requires a consent form signed by the person tested or the parent of any child under age 18.5
For an adult who’s not competent to consent, it’s only the person with legal authority over that adult’s affairs who can consent on his or her behalf. That may be an adult child; it may be a legal guardian with power of attorney.
When it comes to a child, the key thing to remember is that only the legal parent or guardian has the right to consent to having that child tested. As much as we might like to think otherwise, grandparents don’t have the right to make decisions for a grandchild without consulting the parents.6
Second, who owns — and controls — the DNA?
Even though you’re paying for the test, the DNA data — and the DNA results — belong to the person whose DNA it is. You and your kith and kin can agree in advance on who’s going to manage the test results, and you can certainly agree in advance on who’s going to have access to them, but in the final analysis, the DNA belongs to the person who tested.
We now have working standards for genetic genealogists to consult when it comes to ethical questions like this. They’re the result of major efforts by genetic genealogists, geneticists and others with substantial input from the genetic genealogy community, and the standards provide, in unequivocal terms, that “Genealogists believe that testers have an inalienable right to their own DNA test results and raw data, even if someone other than the tester purchased the DNA test.”7
There’s no wiggle room there. No room for “well, the results won’t mean anything to my cousin.” No room for “maybe my cousin won’t understand them.” No room even for “maybe my cousin doesn’t really want to know what her results show.” So you have to give your cousin access to the data even if you paid for the results.
Now of course the real problem is likely to be the other way around: if you paid for the test and now your cousin doesn’t want you to have access to the data. The only company that has considered that problem is Family Tree DNA, and its consent system provides that the person agreeing to the test also has to agree to give access to the person who paid for the test. The only way your cousin can take access away from you is to pay you back for the cost of the test.8
If you’re testing with any other company, you need to think about this issue — and maybe get something in writing from that kith or kin if you want to be sure you’re going to have access in the future.
Third, and perhaps most importantly, is everybody prepared for what the test might show?
Before anybody takes any DNA test, everybody who’s likely to be impacted needs to stop and think for a minute about what a DNA test can disclose:
Genealogists 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.9
There isn’t a day that goes these days by without a family secret being uncovered by DNA testing. A person believed to be a parent or grandparent is found not to be biologically related to the person tested. A previously-unknown half-sibling or first cousin appears in a DNA match list. A child given up for adoption identifies his or her birth family and seeks contact.
Is the test taker aware of these possibilities? Is the family prepared for them? Really prepared? Have they talked about it? Considered what it will mean if the test does produce an unexpected result?
Until and unless the answer to that “are you really ready for anything DNA can show” question is an unqualified yes, maybe you want to think twice before gifting that DNA kit for the holidays…
SOURCES
- “Terms of Service,” 23andMe.com (https://www.23andme.com/ : accessed 3 Dec 2016). ↩
- “AncestryDNA Terms and Conditions, Revision as of September 30, 2014,” Ancestry.com (https://www.ancestry.com/ : accessed 3 Dec 2016). ↩
- See generally “Release Form,” Family Tree DNA (https://www.familytreedna.com/ : accessed 3 Dec 2016). ↩
- “Welcome to MyHeritage : Terms and Conditions: DNA Services,” MyHeritage.com (https://www.myheritage.com/ : accessed 3 Dec 2016). ↩
- See generally “Geno 2.0 Next Generation Quick Start & Consent Form,” National Geographic Genographic Project (https://genographic.nationalgeographic.com/ : accessed 3 Dec 2016). ↩
- See Judy G. Russell, “Games grandparents play,” The Legal Genealogist, posted 29 Sep 2013 (https://www.legalgenealogist.com/blog : accessed 3 Dec 2016). ↩
- ¶3, “Standards for Obtaining, Using, and Sharing Genetic Genealogy Test Results,” Genetic Genealogy Standards (http://www.thegeneticgenealogist.com/wp-content/uploads/2015/01/Genetic-Genealogy-Standards.pdf : accessed 3 Dec 2016). ↩
- See “Legal Issues – Privacy Policy, Terms of Service and Refunds : 3rd Party Payments and Account Access,” Family Tree DNA (https://www.familytreedna.com/ : accessed 3 Dec 2016). ↩
- ¶12, “Standards for the Interpretation of Genetic Genealogy Test Results,” Genetic Genealogy Standards. ↩
Judy,
These are all important questions. A current book by TV anchor Bill Griffeth, “The Stranger in My Genes,” demonstrates exactly what can happen when people don’t fully consider their implications. He and a cousin had done genealogy together for years, when the cousin decided he wanted both of them to do DNA. He pushed Bill, who didn’t understand the implications, until Bill agreed, and after his cousin had his results, Bill did his, the results going first to the cousin. The results showed his father wasn’t his father, which, to put him mildly, threw him for a loop. The current issue of NEHGS’s “American Ancestors” has an excerpt from the book, and an interview with Bill about his further research, and how he now feels about DNA research.
A couple of years ago, my siblings and I discussed asking our mother to do her DNA–she was the last of her generation, before her recent death at 100. We decided that first, she’d refuse, and second, it wouldn’t be ethical because she wouldn’t understand the reason for doing it. It was unfortunate that this didn’t come up five years ago, but it didn’t. Now all we can do is work with our own and our cousins’ DNA, being careful about the ethical issues involved.
Thanks for your careful analysis of this issue,
Doris
I reviewed Bill Griffeth’s book some weeks back, Doris — see “The unexpected result: book review.”