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Skillbuilding: The Ethics of DNA Testing

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Judy G. Russell, JD, CG, CGL, “The Ethics of DNA Testing,” OnBoard 21 (January 2015): 1--2, 7.

Handling family secrets, safeguarding information about living people, crediting others’ work: the ethical challenges of family history in the twenty-first century can be daunting. And no area of family history poses more ethical questions than genetic genealogy—dealing with the secrets locked away in our very genes.

In a direct and powerful way, DNA testing can see through family lies and paper-trail distortions, and expose secrets someone at some time may have tried desperately to hide: an undisclosed adoption; illegitimacy and infidelity; and misattributed parentage, among others. Of course other genealogical evidence may lead to the same disclosures, and it is a rare family history that does not uncover some skeletons in the family closet. But the seeming ease with which DNA sheds light into the recesses of that closet gives rise to special ethical considerations, among them:

  • What does the test-taker need to know?
  • What information can and can’t be shared with and among and even about the genetic cousins discovered through DNA testing?
  • What concerns does a genealogist have in helping a client or colleague make a decision to test?

Part of the problem is that there are “no established standards” to follow in making sure genetic genealogy is handled ethically and responsibly.1 While an ad hoc committee of genetic genealogists took the lead in drafting a comprehensive set of Genetic Genealogy Standards early in 2014,2 by year’s end it had not yet released the finished product. The aim of the project is to “provide ethical … standards for the genealogical community to follow when purchasing, recommending, sharing, or writing about the results of DNA testing for ancestry.”3 The committee, however, made it clear from the outset that “it is the responsibility of the test-taker to understand and consider these standards before ordering a test, and when reviewing or sharing their results.”4

Among the standards proposed and receiving widespread support of genetic genealogists are several clear mandates:

  • Testing is undertaken only with the informed consent of the person tested.
  • Those tested understand that DNA testing “can reveal unexpected information about the test-taker and his or her immediate family, ancestors, and/or descendants. For example, DNA test results can reveal misattributed parentage, adoption, health information, and previously unknown family members, among other unexpected outcomes.”
  • Information about another’s test results is shared only with the other’s consent.5

These standards dovetail with accepted standards of the genealogical community governing the sharing of information. BCG’s own Code of Ethics includes this pledge: “I will keep confidential any personal or genealogical information given to me, unless I receive written consent to the contrary.”6

Moreover, the National Genealogical Society published comprehensive standards in 2000, many of which are directly applicable to genetic genealogy. The standards note in part:

Responsible family historians consistently—

  • respect the restrictions on sharing information that arise from the rights of another as an author, originator or compiler; as a living private person; or as a party to a mutual agreement. ...
  • inform people who provide information about their families as to the ways it may be used, observing any conditions they impose and respecting any reservations they may express regarding the use of particular items.
  • require some evidence of consent before assuming that living people are agreeable to further sharing of information about themselves.
  • convey personal identifying information about living people—like age, home address, occupation or activities—only in ways that those concerned have expressly agreed to.
  • recognize that legal rights of privacy may limit the extent to which information from publicly available sources may be further used, disseminated or published. ... [and]
  • are sensitive to the hurt that revelations of criminal, immoral, bizarre or irresponsible behavior may bring to family members.7

Applying all of these standards to common genetic genealogy questions, the following may help guide us through some of the most common situations we encounter.

Permission to submit sample: The three major companies providing DNA tests for genealogy require that DNA samples be submitted only by the person whose DNA is to be tested or by another individual who has the legal authority to act on behalf of that person.8 A parent has the authority to submit a sample for a minor child, but a grandparent who is not the legal guardian of a grandchild generally does not have authority to submit the child’s sample.9 Local law may affect the rights of one divorced parent to submit a child’s sample if the other parent shares legal custody. A person who has specific permission from another individual has the authority to submit a sample from that other individual; the legal representative of an estate has the authority to submit a sample from the deceased.

Of course, no one should submit a sample for someone else without permission, and forging a signature on a permission slip is wrong—and illegal.

Permission to share results: At the most, permission slips required by the testing companies give permission for the company to share test results with others who match the person whose sample is tested. These signed permission slips do not give the matches permission to re-share that information with others, such as on a website, in an email, or in a public database. Specific permission should be secured before disclosing to any third person that we share a DNA match with another individual. In particular, even if we paid for a DNA test for a cousin or relative, we must understand that the DNA belongs to another person, and we should be careful not to disclose those results unless we have permission to do so.

Attention to disclosures inherent in results: DNA tests can reveal information that no paper trail discloses: an undocumented adoption, for example, or the fact that someone long believed to be a parent or grandparent has no biological relationship to a child or grandchild at all. This raises two ethical concerns: (1) making sure the person who is testing understands that this kind of information will be revealed; and (2) making sure we are circumspect in sharing results of this nature with anyone other than those directly affected (and, even with those people, in a careful, non-public way unless specific permission to disclose is given). The informed consent of the test-taker is essential: if the individual or his or her immediate family is not prepared for the possibility of unexpected results, it may be better to forego DNA testing altogether.

Refraining from “DNA bullying”: In our enthusiasm to reconstruct families, genealogists often push others beyond their comfort points without thinking through the consequences. In a critical blog post, “No (DNA) Bullying,” genetic genealogist Roberta Estes described a host of actions that go beyond merely asking for participation in DNA testing and cross over into behavior that should be regarded as bullying. Asking a cousin whose DNA we need to solve a genealogical mystery in our heritage to test at our expense is fine; blackmailing that cousin to get a sample after the cousin has refused to test is bullying. Asking a match to share genealogical information to help identify a common ancestor is appropriate; stalking that match to home or office after the match has declined to share information is bullying.10

The ethical quandaries inherent in DNA testing often give rise, as noted by Christine Kenneally, author of The Invisible History of the Human Race: How DNA and History Shape Our Identities and Our Futures, to “stories about people who do their genetic genealogy and expose some secret in their family that can potentially be very distressing.” She writes that there is “this idea that your genome is a kind of Pandora’s box. Be careful looking inside, you never know what might come out.” But she adds that as she did her research, she found that “there were many more stories of positive discovery and revelation, and a willingness to embrace the complications that come up when we look into our past.” And, she continues, “the distress comes from the secrets, not the method with which they are revealed.”11

With care to ensure that tests are taken only by those whose informed consent precedes the testing, and that the results are shared only with consent, there is no reason why DNA testing should be treated any differently from other genea­logical evidence—and no reason not to embrace it as simply one more method by which family secrets are brought to light.

All URLs accessed 29 December 2014.

  1. Melinde Lutz Byrne and Thomas W. Jones, “DNA Standards,” National Genealogical Society Quarterly 101 (December 2013): 243.
  2. See “Genetic Genealogy Standards and Ethics,” review copy, version 1.0, 12 May 2014, Genetic Genealogy Standards (https://sites.google.com/site/ geneticgenealogystandard/document). Quoted with permission.
  3. Ibid., preamble.
  4. Ibid.
  5. Ibid.
  6. “Code of Ethics and Conduct,” Board for Certification of Genealogists (http:http://vps34439.inmotionhosting.com/~bcgcer5//aboutbcg/code.html).
  7. “Standards for Sharing Information with Others,” 2000, PDF, National Genealogical Society (http://www.ngsgenealogy.org/galleries/Ref_Researching/gssharing.pdf). Quoted with permission.
  8. For 23andMe, see “Terms of Service,” paragraph 5(d), 23andMe.com (https://www.23andme.com/about/tos/). For AncestryDNA, see “Ancestry DNA Terms and Conditions,” paragraph 3, rev. 30 September 2014, AncestryDNA.com (http://dna.ancestry.com/legal/termsAndConditions). For Family Tree DNA, see “Release Form,” PDF, FamilyTreeDNA.com (https://www.familytreedna.com/forms/FTDNA-release-form.pdf).
  9. See Judy G. Russell, “Games Grandparents play,” posted 29 September 2013, The Legal Genealogist (http://www.legalgenealogist.com/blog/2013/09/29/games-grandparents-play/).
  10. Roberta Estes, “No (DNA) Bullying,” posted 15 May 2013, DNAeXplained – Genetic Genealogy (http://dna-explained.com/2013/05/15/no-dna-bullying/).
  11. Simon Worrall, “How DNA Is Reshaping How We See Ourselves—and Our History,” posted 16 November 2014, National Geographic News: Book Talk (http://news.nationalgeographic.com/news/2014/11/141116-dna-human-history-genealogy-eugenics-health-science-ngbooktalk).

 

Judy G. Russell, JD, CG, CGL

This article was originally published in OnBoard, BCG’s educational newsletter and is protected by copyright. Individuals may download and print copies for their personal study. Educators are granted permission to provide copies to their students as long as BCG, OnBoard, and the appropriate author are credited as the source of the material. Republication elsewhere is not permitted.