People use at-home DNA testing kits mostly for fun, to find clues to their ethnic ancestry and heritage. Occasionally, though, they find out more than they bargained for—like that the person they assumed was their parent is, in fact, not their biological parent: Not Parent Expected, or NPE, is the genealogical term.
Rob Whitley, an associate professor in McGill University’s department of psychiatry, was at a conference in Brussels a few years ago when the subject came up in a talk about the social aspects of DNA testing given by Belgian biologist and geneticist Maarten Larmuseau.
“And I was thinking, ‘This will have huge mental-health impacts,’” recalled Whitley, a research scientist at the Douglas Research Center.
“You think you are learning about ethnic ancestry and you learn, with the click of a mouse, that your father is not your father, which means that your mother was having an affair: It reveals secrets and lies,” he said, and potentially disrupts “a person’s whole narrative.”
In the 15 years these DNA tests have been available, 30 million people have taken them — and yet little, if anything, in the scientific literature looks at the mental-health ramifications of learning surprising and potentially distressing news, Whitley said. Larmuseau, an associate professor of human genetic genealogy at Katholieke Universiteit Leuven, told him such a study would fill a hole in the literature — and that he was interested in collaborating.
With $75,000 in funding from Genome Canada and the Social Sciences and Humanities Research Council, Whitley reached out with a flyer on social media in late May to groups including the NPE Friends Fellowship, with more than 10,000 members. Larmuseau shared the flyer on Twitter.
The response was nearly immediate and overwhelming: Within just a couple of weeks, more than 300 emails were received from around the world, from as far away as Australia and Hong Kong.
Initially, “we thought we would get two people a month,” said Whitley. “We weren’t expecting this level of uptake.
“I have never seen this kind of enthusiasm for a research project — and I have been doing research for more than 20 years,” he said.
People sent “long, very touching, very poignant emails” in which they recounted how finding out affected their lives, Whitley said, and it was difficult for him to tell so many they couldn’t participate in the study because there is funding for just 50 people.
Some said “that their self-identity is shattered, that it is a punch in the gut,” he said. “It has caused a lot of internal trauma, revealing family secrets and lies.”
Some said they’d always felt their father treated them differently. “We are hearing from people saying they had some intuition.”
Whitley said he approaches all studies “from a neutral point of view.” While he is equally open to hearing whether someone’s experience has been positive or negative, “we are seeing a lot more negatives than positives.”
The response “goes to show how this group feels a need to tell their stories — and get their issues on the public-policy agenda.”
The study’s goal is to learn “how finding out affected their mental health and well-being, what kind of support they had from family and friends, whether they sought help from mental-health professionals or whether they kept it to themselves,” Whitley said .
The format involves in-depth interviews by Zoom or phone, and a series of open questions. “It is more a sociological than a quantitative method,” he said. Interviews have already begun.
Some who emailed said that therapists are not necessarily helpful because they have not had training in addressing the topic, and that even members of their own families cannot understand the degree to which the discovery has affected them. It “disrupts the whole narrative,” Whitley said.
He said he hopes one outcome from the study will be suggesting “some sort of public policy regarding these tests.” Should one have to be over the age of the majority to take one of these tests, for instance? And should one be limited to taking the test for oneself? Such a test can be used “nefariously in a family,” he said. “If you have a suspicion your child is not your child, you can find out yourself.”
Typically, respondents had received the test kit as a gift. Depending on which company’s kit they were using, they submitted saliva in a test tube or a mouth swab for DNA to be extracted from their cells. Then they received an email informing them of their ethnic ancestry.
The test results also connect them with anyone biologically related to them, assuming that they, too, have taken the test. Companies like 23andMe make this feature optional — it requires people to opt in.
Companies do include warnings, like this one from ancestry.ca: “You may discover unexpected facts about yourself or your family when using our services. Once discoveries are made, we can’t undo them.”
And this, from 23andMe: “Genetic information can also reveal that someone you thought you were related to is not your biological relative. This happens most frequently in the case of paternity, where someone learns that their biological father is not who they thought it was.”
But Whitley said he thinks companies marketing these DNA tests have a responsibility to feature these advisories more prominently, and that trained counselors should be available to deal with people distraught by what they learn.
Among those who emailed him, “quite a lot of people said they called to say they had the wrong results — and they are speaking to customer service agents, not people trained in counseling.”
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