DNA testing: What if the results are distressing?

While genealogical DNA testing can be marketed as a harmless and exciting way to learn more about your ancestors’ heritage, a Canadian researcher says there needs to be more support for those who get unexpected results that have the potential to damage family ties to disturb, which raises questions about paternity and infidelity.

Robert Whitley, associate professor of psychiatry at McGill University, examines the psychosocial experiences of Canadians who receive startling news from their ancestors’ DNA testing, particularly “unexpected parental” events when someone believed to be… a person’s parent is not in fact the biological mother or father.

“You meet a family that you didn’t know existed, and that can be very psychologically upsetting and can take a tremendous toll on mental health and family harmony,” he told CTVNews.ca in a phone interview on Friday.

Whitley says it’s a more common scenario than meets the eye.

“Estimates of misattributed paternity… are around 2 percent of the population, so that affects maybe 1 in 50 people who may be receiving this very shocking news.” It’s not an insignificant number considering that millions of people take these tests. ” he explained.

Whitley said many people take genealogical DNA tests — like those offered by companies like 23andMe and AncestryDNA — to gain a better understanding of their heritage. However, the test results also connect users to anyone biologically related to them.

He noted that some people welcome this, excited about the prospect of meeting distant, third or fourth cousins, but others may learn that their parents aren’t actually biologically related to them, which Whitley says could affect their mental health in the long term can affect.

“They’re completely unprepared for this because the people they’re paired with are people they don’t know up to this moment, and that causes a lot of psychological shock,” Whitley said.

He pointed out that this could be related to factors such as parental infidelity, adoption or sperm donation – all unexpected news that have the potential to destroy one’s identity.

“As a result, and from what we’ve learned so far, many people in this situation feel like they’re stranded on a boat in the ocean because the psychologists and therapists don’t have evidence-based practices that can help people do that,” Whitley said.

This break in everyday life is called a biographical break. Whitley said this is known as disrupting the narratives people have to understand themselves and the course of their lives. Other examples can be divorce or job loss.

“This can completely damage your self-image, it can affect the harmony of your family relationships, it can lead to major existential questions and doubts about who you are and where you’ve been in life and where you’re going in life,” Whitley explained.

With his research, funded by the nonprofit GenomeCanada, Whitley says his team aims to better understand the experiences of those who receive shocking news from DNA testing from a mental health perspective. He says the data will then be used to create new relief resources for those who may face this situation in the future.

“One of the goals of research is really to understand what problems people face, how they respond to them, and what they do to help themselves on their journey to recovery,” he said.

For the research, Whitey wants to interview about 50 people by the end of this year and then use the results in 2023 to develop targeted therapies and resources. Those who have received surprising news about their ancestry from a genealogical DNA test and wish to participate in the study can email Whitley directly at robert.whitley@mcgill.ca.

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Whitley said there is currently no specific guidance for psychologists and therapists on how to help with “unexpected” events, which is worrying as the popularity of DNA testing increases and more counselors are faced with such cases.

According to data from the Massachusetts Institute of Technology (MIT) released in 2019, more than 26 million people have had a genealogical DNA test.

“We know that some people have been to psychologists [or] psychiatrists and just got the kind of generic treatments that some people get when they’re struggling,” Whitley said.

He said sufferers have also reported little help from DNA testing companies in these situations, and says companies should be more transparent and open about the risks involved.

AncestryDNA told CTVNews.ca in an emailed statement on Friday that it takes its responsibilities to its customers and the potential impact of “complex discoveries” from its test “very seriously.”

“We have a small, dedicated group of very experienced representatives who speak to customers with more sensitive issues,” a company spokesman said in the email.

It also offers a warning about unexpected online test results in its privacy policy.

“While using our services, you may discover unexpected facts about yourself or your family,” states Ancestry’s privacy policy. “Once discoveries are made, we cannot undo them.”

A spokesman for 23andMe told CTVNews.ca in an emailed statement on Friday that there are “various measures” in place to prepare customers for unexpected information, as well as giving them a choice about whether they want to know it.

“First, we prepare clients with all the information they need upfront and educate them that taking the test can yield unexpected and sometimes life-changing results,” the spokesman said. “We warn you that you may discover things like ‘Your father isn’t genetically your father.'”

23andMe said the feature it hopes to connect through the biological match tests is optional on its website, but not all companies offer it. Additionally, 23andMe said it has a customer care team that is “specially trained” to help those who spot unexpected family members.

However, Whitley would like to see more standardization of mental health support across Canada to help those who receive unexpected DNA test results, as well as targeted therapy tailored specifically to the needs of this group.

“It poses a lot of problems for a lot of people and nobody really talks about it in public… Psychologists try to talk about it, but they don’t have the research that allows them to do these kinds of therapies and interventions that we’re dealing with.” want to carry out these problems,” said Whitley.

Whitley said he hopes his research will generate greater awareness that, despite the promotion of DNA testing as an “exciting discovery process,” there is still risk.

“The risk is that you might learn information that might be shocking and could turn your world upside down,” he said. “It could be positive news, you could learn that you have family relationships that you weren’t aware of and that they are great people … or it could be news that you were really ill-prepared for, so … keep going.” Caution.”