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?”
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
- “DNA Services,” MyHeritage – Terms and Conditions (https://www.myheritage.com/terms-and-conditions : accessed 23 June 2018). ↩
- Paragraph 8, “Your Privacy,” Ancestry.com, effective 30 April 2018 (https://www.ancestry.com/ : accessed 23 June 2018). ↩
- Paragraph 3, Genetic Genealogy Standards (http://www.geneticgenealogystandards.com/ : accessed 23 June 2018). ↩
- See Judy G. Russell, “When you ask…,” The Legal Genealogist, posted 6 May 2018 (https://www.legalgenealogist.com/blog : accessed 23 June 2018). ↩
- Paragraph 12, Genetic Genealogy Standards (http://www.geneticgenealogystandards.com/ : accessed 23 June 2018). ↩
Unfortunately if we find the test taker does not want to know, and we keep our side of the bargain and keep what we find private and not tell anybody at all, they likely will find out eventually anyway. Other testers who match our test taker will be contacting relatives all around him, and someone else could release the bullet.
If a person does not want to know (or maybe knows and does not want anyone else to know), it is better to respect their wishes and not to test them at all.
The decision whether to test at all is a whole ‘nother topic — but equally important, for sure.
Judy, I am surprised you didn’t mention the webinar by Karen Stanbary, CG and Blaine Bettinger on the APG website. The two of them did a terrific webinar for the Association for Professional Genealogists on exactly this topic. Karen, a credentialed social worker, an excellent genealogist, and DNA expert covered those “difficult” conversations. That presentation alone is worth the price of membership!
I tend not to highlight items that are behind membership walls, simply because non-members can’t access the resources.
It is for us to choose, sometimes. Beyond legality and ethics, there’s a third consideration – humaneness: I recently discover through a DNA match to me and some sleuthing, that, beyond much doubt, the son of one of my cousins is the illegitimate father of a now grown young lady searching for her unknown father.
My relative, of course, never submitted his DNA and doesn’t own mine. But he’s tagged nevertheless. So there’s no legal or ethical issue, but surely a humane one. What do I owe him or her?
Do I tell him (through his father who I have some contact with)? it was 25 years ago, just before or during a marriage that later ended in divorce. According the young girl he may not know he’s a father. He’s now remarried, so it may not be a family breaker if I tell him – maybe.
Do I tell her? I’ve corresponded with her after the original match but before I learned the connection. I guess I could waffle and say, “You know my last name, look in your local phone book.
Do I just keep quiet?
I’ve the exact same situation, Robert. Because an adoptee closely matches my family members, I have been able to determine he’s a MUCH closer match to a cousin’s family. I believe it’s not up to me to keep this a secret — the adoptee has a right to know who his birth family is (but cannot be guaranteed of a relationship). And my cousin’s family needs to know of the adoptee’s existence.
Yes, I’m concerned about disrupting lives just because of my hobby. And it’s certainly tempered my enthusiasm for testing everyone, because it IS not a matter of if but when.
After helping lots of people in these situations, I now have first hand experience of the dynamics and issues. It’s definitely tricky but in the end I did not think it was my choice to keep the knowledge a secret. (However, I wonder how I’d feel if I didn’t find the adoptee to be a wonderful & very likable person?!)
But of course what we find doing document research is different because the person with the surprise results was not a participant in the research.
Judy, I was so privileged to meet you in Australia and have followed your posts ever since. Thank you for sharing your experience, knowledge and ethics to the newbies in this field. P.S. Although retired, I have worked as a paralegal so do appreciate your emphasis on ethics and empathy of the person. Cheers
Thanks so much for the kind words!
Through our DNA tests, I learned that my brother is really my 1/2 brother, he has a different father. We’re the only 2 siblings, our parents are dead. I don’t plan to tell him unless I find a close relative of his. We’re in our mid 60s, and I think telling him would be cruel.
This is very much a Golden Rule situation: do unto others as you would want them to do unto you. I would never ever want a sibling making a decision like this for me. It’s MY choice, not theirs.
I agree. I would not tell him, unless I found a sister of his etc..and then I’d have to think. His relatives may or may not be nice people.
We need to ask ourselves though whether we have the right to make that decision for someone else. Unless we know that brother doesn’t want to know, we’re treating him as a child if we choose for him.
I have a different, perhaps a less lawyerly one, which is found in this quote I think about whenever dealing with matters of the truth, “Three things cannot be long hidden: the sun, the moon, and the truth.”
I think all too often people try to make things more complex than they really are when it comes to DNA. Historians and genealogists should let facts speak for themselves and not try to make things more complicated than need be. We’re fact finders, not life coaches or therapists.
I’ve helped six different adult adoptee cousins identify birth parents (for free) using DNA tests such as AncestryDNA and 23andMe. In each instance, these people found me because I had an extensive tree online. Each of these new cousins shared a common theme in life. They each woke up each morning and looked in the mirror and wondered: “Where did I come from?”, “Who am I?”, and “Who were my parents?” There is an important intersection happening between family historians and adult adoptees yearning to learn their bloodline. The choice I make is to help them and not get bogged down in legalize.
As I understand from the research I’ve read, adoptee laws in many states were written to protect the minor child from interference from the parents that gave her or him up for adoption. The intent of state legislatures were not to prevent a 40 year old from learning her or his bloodline.
The truth will set us all free and we need to embrace it — now more than ever. And it wouldn’t hurt for those of us who are capable of doing so to write an email to legislators in the states that have restrictive laws regarding adoption to help them understand the impact — and costs — these adult adoptees must endure just trying to learn their bloodline and to encourage them to modernize the state adoption laws.
I tested with one company, then learned a first cousin who is more like a sibling than a cousin to me had tested with a different company. We both hesitated for a long time before attempting to get our results into the same database where they wouls be compared with each other. What if we didn’t match? Even though I knew it shouldn’t change anything about the way we felt about each other, there was still that nagging doubt. Finally, I tested with the other company without telling my cousin, so that if we turned not to be a match I could pretend not to have tested, and waited anxiously for the results. When the notice arrived, I opened the results with trepidation, but there at the top of the list was my cousin. We have since identified 2d cousins on both shared grandparents’ sides of the family, confirming our relationship to two sets of great-grandparents, plus more distant cousin back in the old country who are secended from one set of 2xgreat-grandparents. In addition, I have been able to reconnect with 2d cousins on the other side of my family who I had lost contact with and share research and a lot of great family memories.