Select Page

When the DNA results are not what was expected…

The question came in again this past week, as it has so many times in recent years.

A genealogist had asked others in the family to test to further the genealogist’s own research. When the results came in, well, they weren’t what anyone had expected.

Maybe in a given case it shows that the man who raised the tested person is not the tested person’s biological father at all.

Or that the “adoptive parents” of the tested person are really his biological grandparents or other close kin.

Or that only one of two supposed full-blood siblings is the child of both parents… and one is the child of only one of the parents.

Or… or… or…

These things happen all the time.

And, all too often, it leads to the kind of question that came in again this past week, as it has so many times in recent years: “Am I obligated to disclose this information to him?” “How much do I have to tell her?” “Is there a legal right to this type of information?”

DNA questions

Let’s take the easy one of these first: “Is there a legal right to this type of information?”

Of course there is. Nothing could or should be clearer from both a legal and an ethical standpoint than this essential truism: the data, the test, the results all belong to the person who tested, whose DNA was examined.

That’s set out in the terms of use of the testing companies. For example, the terms of use at MyHeritage DNA state: “Any genetic information derived from the DNA samples, the DNA Results and/or appears in the DNA Reports continues to belong to the person from whom the DNA was collected…”1 At Ancestry, the privacy statement notes: “Your DNA Data belongs to you.”2

Our own codes of ethics back this up: “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.”3

As I said, that’s the easy one.

It’s a lot harder when the question is what we have to tell the person who tested who’s not into genealogy, who’s only tested because we ask, and who may not really want to know all the nitty gritty details of what the test discloses. When the real issue is whether we have an affirmative duty to disclose potentially unpleasant facts.

And it’s a whole lot harder to handle that question when it’s accompanied by the “ulp… what do I do now?” feeling rather than if it had been handled at the “this is what a test could show; if it does, do you want to know?” stage of things.

At that early stage, of course, we can take advantage of the great forms that folks like Blaine Bettinger and Debbie Parker Wayne have put together — more about those here — to be sure that our test takers really understand what their options are and make their choices in advance on what they do and don’t want to know about the results.4

But when the results come in before we get that what-do-you-want-to-know issue straightened out, then what?

The bottom line here is that this really isn’t an issue of legality but rather an issue of ethics. In every one of these cases, we have someone who has tested and who has an absolute right to the DNA information… If the person wants it. And — because we didn’t ask up front — we don’t know if the person wants it or not.

And ethically, I don’t think we have any real choice but to ask that test taker how much information, if any, he or she wants about the results. We can’t ethically make that decision for another competent adult. We don’t have the right to decide whether to disclose or withhold information; it’s the test taker’s choice, not ours.

Now, in saying that, I do think we can be careful and circumspect in what we say. I do think we can explain the range of choices without disclosing that we already know the results. We can say, for example, that we need to review the options with the test taker to be sure everyone understands that, in DNA results, there will be some information about ethnicity, some information about cousins we may match from a line far back in time or more recent, some information that could disclose family secrets and some information that’s just ordinary and (perhaps to our test taker) boring genealogy.

We can use the language of the genetic genealogy standards: “…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.”5

Or we can use those same informed consent forms we could have used before the results came in and have the person make his or her choices now about what information is really important — and what isn’t.

Once we find out what the test taker really wants to know, we’ll know what ethically we must disclose.

Because it’s really the test taker’s choice, not ours.


SOURCES

  1. “DNA Services,” MyHeritage – Terms and Conditions (https://www.myheritage.com/terms-and-conditions : accessed 23 June 2018).
  2. Paragraph 8, “Your Privacy,” Ancestry.com, effective 30 April 2018 (https://www.ancestry.com/ : accessed 23 June 2018).
  3. Paragraph 3, Genetic Genealogy Standards (http://www.geneticgenealogystandards.com/ : accessed 23 June 2018).
  4. See Judy G. Russell, “When you ask…,” The Legal Genealogist, posted 6 May 2018 (https://www.legalgenealogist.com/blog : accessed 23 June 2018).
  5. Paragraph 12, Genetic Genealogy Standards (http://www.geneticgenealogystandards.com/ : accessed 23 June 2018).
Print Friendly, PDF & Email