The ethics of DNA testing

Requiring consent

Reader Mark D. Lyon is concerned about what’s been called “DNA stalking” — a going-to-extremes version of getting a DNA sample for genetic genealogy.

He’d come across an article in the New York Times from 2007 that discussed genealogists who literally laid in wait for suspected relatives who’d declined to give them a DNA sample in the hopes of finding some discarded item that could be tested without the person’s knowledge.1 And he didn’t much like what he was reading: “I do know personal boundary violations when I see them — legal or not.”

Mark is quite right to note that this is more of an ethical issue than a legal issue, because the simple fact of the matter is that, in most places, surreptitious collection of a DNA sample — grabbing some discarded item like a cigarette butt or a coffee cup and submitting it for analysis — isn’t illegal.

As of 2009, the Genetics and Public Policy Center reported that:

(Its study) found 10 states that restrict surreptitious collection, analysis, and/or disclosure for both health- and non-health-related purposes, 15 states that restrict surreptitious testing for health-related purposes only, six states with restrictions in the context of court-ordered parentage proceedings, and two states with employment-related restrictions only. No laws relevant to surreptitious DNA testing were identified in 21 states and the District of Columbia.2

By 2012, 11 states had some form of comprehensive statute requiring consent for genetic testing, 15 states and the District of Columbia had no laws on DNA collection or disclosure at all, and most of the remaining states only limited DNA testing in certain contexts, such as insurance or employment.3

So, for the most part, you’re not committing a crime if you manage to snag a DNA sample without somebody’s consent. Getting it tested by a genetic genealogy company, on the other hand… well, you’d certainly be committing a fraud if you tried. All four places where I’ve currently tested — 23andMe, AncestryDNA, Family Tree DNA and National Geographic’s Geno 2.0 project — require that the sample be submitted by the person whose sample it is or by someone with the legal authority to consent for that person (such as a parent or guardian on behalf of a child). For example:

     • 23andMe’s terms of service require that “You are guaranteeing that any sample you provide is your saliva; if you are agreeing to these TOS on behalf of a person for whom you have legal authorization, you are confirming that the sample provided will be the sample of that person.”4

     • At AncestryDNA, “you represent that any sample you provide 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.”5

     • Family Tree DNA explains, repeatedly, in a number of contexts, that “Even if you paid for the test of a friend or relative, they need to be the one to consent … we ask that you practice ethical testing and kit conservatorship…”6

So… why should we care? What’s the harm, anyway? After all, that cousin isn’t doing anything with that DNA sample, and I’m not going to misuse the information, right? The hitch is that the ethical line is really clear: yeah, we want the information, but it belongs to the other person who has the right to say yes or no. It’s the old Golden Rule again: if we want the right to say no to an intrusion in our lives, we have to acknowledge that others — even our doggoned cousins with the DNA we really really need to break down that brick wall — have the right to say no as well.

And if we don’t accept that such a right exists, what do we do with situations like these, suggested in a 2011 law review article:

“• The political party that is interested in discovering and publicizing any predispositions to disease that might render a presidential candidate of the opposing party unsuitable for office. …
• An individual’s personal enemy who would be thrilled to analyze the genetic information of his target and post information on the internet about the target’s likelihood of becoming an alcoholic, a criminal, or obese. …
• A wealthy grandparent who suspects that a grandchild is not genetically related to her and plans to disinherit him if that is the case. …
• Fans who would pay a high who would pay a high price to buy the genetic information of their favorite celebrity.”7

So… how do we as genealogists feel about running around after living people, collecting cigarette butts or coffee cups or other items that might contain a cousin’s DNA? Uneasy. Very very uneasy.

It may not be illegal where I live. But it’s ethically wrong. The National Genealogical Society says we should “respect the restrictions on sharing information that arise from the rights of another … as a living private person.”8 The Association of Professional Genealogists requires its members to “promote the trust and security of genealogical consumers.”9 And as a Certified GenealogistSM, I am obliged to “keep confidential any personal or genealogical information given to me, unless I receive written consent to the contrary.”10 How much more, then, am I obliged to obtain that consent to gain access to personal information to ensure that it is freely given to me?

It’s something I wouldn’t do.

It may not be easy to get that cousin’s permission. It may not always be possible to get permission. But getting that consent is the only ethical way to go.


SOURCES

  1. Amy Harmon, “Stalking Strangers’ DNA to Fill in the Family Tree,” The New York Times, online edition, posted 2 Apr 2007 (http://www.nytimes.com : accessed 17 Nov 2012).
  2. State laws pertaining to surreptitious DNA testing,” Genetics and Public Policy Center, PDF (http://www.dnapolicy.org : accessed 17 Nov 2012).
  3. Privacy and Progress in Whole Genome Sequencing, Presidential Commission for the Study of Bioethical Issues, PDF report, October 2012, Appendix IV: U.S. State Genetic Laws, 121-124 (http://bioethics.gov : accessed 17 Nov 2012).
  4. Terms of Service: Prerequisites,” 23andMe (https://www.23andme.com/ : accessed 17 Nov 2012).
  5. US Terms and Conditions – Revision as of May 3, 2012: DNA Testing,” AncestryDNA (http://dna.ancestry.com : accessed 17 Nov 2012).
  6. Frequently Asked Questions,” Family Tree DNA (http://www.familytreedna.com/ : accessed 17 Nov 2012).
  7. Elizabeth E. Joh, “DNA Theft: Recognizing the Crime of Nonconsensual Genetic Collection and Testing,” 91 Boston University Law Review 665, 667-668 (2011).
  8. Standards For Sharing Information With Others,” National Genealogical Society, PDF (http://www.ngsgenealogy.org/ : accessed 17 Nov 2012).
  9. Code of Ethics,” Association of Professional Genealogists (http://www.apgen.org : accessed 17 Nov 2012).
  10. Code of Ethics and Conduct,” Board for Certification of Genealogists (http://www.bcgcertification.org : accessed 17 Nov 2012).
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16 Responses to The ethics of DNA testing

  1. Celia Lewis says:

    If peoople blur the ethical line by saying “it’s not illegal after all”, what else might they do…? Slippery slope indeed. If we only made decisions based on what was defined as legal or not, this would NOT be a fine world!! Great post, Judy, and I hope those who read recognize the importance of informed consent.

    • Judy G. Russell says:

      We can certainly hope — and certainly expect — that folks will act ethically, Celia. We’re in for a very bumpy ride if they don’t!

  2. Anne Willson says:

    And we wouldn’t want to cause any MORE feuds, right? Good points, Judy. I totally agree with you!

  3. Loretta says:

    While I agree, after doing the AncestryDNA autosomal test I can’t imagine anyone getting the amount of saliva needed without the person noticing ;-)

  4. In England, Wales and Northern Ireland obtaining DNA without consent was made illegal with the Human Tissue Act in 2004. I can’t understand why legislators have not implemented similar legislation in the US. One of the worst examples of this practice occurred a couple of years ago when two Belgian reporters followed a person in the US for seven days to get a DNA sample. The person was believed to be a relative of Adolf Hitler: http://www.dailymail.co.uk/news/article-1305414/Hitler-descended-Jews-Africans-DNA-tests-reveal.html.

    • Judy G. Russell says:

      Debbie, the United States is positively schizophrenic over things like this. On one hand, we hate it when government tells us what we can and can’t do. On the other hand, we hate it when somebody else invades our privacy. At some point, those two collide, and we then have to decide whether government (that is, the law) has a role in regulating this sort of conduct or not.

      • It does indeed seem odd, especially when you have the FDA, the American Medical Association and genetic counsellors who all seem intent on burdening us with unnecessary restrictions, whereas the one area that does need regulating is completely overlooked!

        • Judy G. Russell says:

          Nobody ever said that people’s attitudes about government regulations — or government’s attitude about the things that need regulatiing — had to make sense!

  5. Jay Crossman says:

    After reading the with some interest I was reminded of the book “The Immortal Life of Henrietta Lacks”. If something, in her case a tissue, in our case DNA, who is to say what long lasting effect that may have. For better or worse.

    How would a person feel to find out there DNA was the source of a discovery to control eye color before birth? Or hair color or any other physical trait.

    Secondly, if you spend hours tracking someone down for their saliva or a DNA test by hiding behind dumpsters and following them to work in hope of gleaning a discarded coffee cup, make no bones about it, YOU NEED HELP! Deep deep psychological help. Think bulk rate discount amount of help.

    Happy hunting and keep up on the awesome and informative article.

    J~

    • Judy G. Russell says:

      Yep, The Immortal Life of Henrietta Lacks came to my mind as well, Jay. And that case really bothers me… a lot.

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