The impacts from using genetic testing to track down relatives

Date:
February 24, 2022
Source:
Cell Press
Summary:
Genetic genealogy has become a popular hobby over the past several
years, thanks to direct-to-consumer (DTC) genetic testing and
relative-finder services offered by some DTC genetic testing
companies. Researchers now report results from a survey that
asked people who had participated in these services what effect
the discovery of previously unknown relatives had on their lives.



FULL STORY ========================================================================== Genetic genealogy has become a popular hobby over the past several years, thanks to direct-to-consumer (DTC) genetic testing and relative-finder
services offered by some DTC genetic testing companies. In a paper
published February 24 in the American Journal of Human Genetics,
researchers report results from a survey that asked people who had
participated in these services what effect the discovery of previously
unknown relatives had on their lives.


========================================================================== Among the most important findings were that identifying a genetic relative appeared to be somewhat common. Additionally, those discoveries were
generally experienced as neutral or positive and didn't appear to have
a big impact on participants' lives. However, some participants learned
things that could be considered significant and destabilizing -- such as
that their biological parent wasn't who they thought. These participants
were especially vulnerable to negative outcomes.

"Everyone on our team is involved in studying the ethical, legal,
and social implications of DTC genetic testing, and we've been paying
attention to stories in the media about individuals who've made surprising family discoveries from these tests and relative-matching services,"
says lead author Christi Guerrini of the Center for Medical Ethics and
Health Policy at Baylor College of Medicine. "We wanted to understand if
these and other kinds of discoveries are common, how they're experienced
by those making the discoveries, and what people are doing as a result."
The investigators sent the survey to about one million DTC genetic testing customers and genetic genealogy database participants; more than 26,000 responded. The final sample for analysis consisted of 23,196 completed
or substantially completed surveys. Among the reasons that respondents
said they chose to participate in this type of testing were to learn
more about their family or build their family trees; to search for
a biological parent, child, or other relative; or to investigate a
suspicion that they might not be genetically related to family members.

"It seems that many -- perhaps most -- are just curious about their
families and interested in building out their family trees, but
it's clear that quite a lot of participants are looking for someone
or hoping to confirm something in particular," Guerrini says. "It
might be that they're adopted and looking for a biological parent,
or that they've always felt out of place in their family and want to
see if there's something to that feeling. Or they might be looking for information about a branch of their family tree that's unknown to them,
or to confirm a family story that's been passed down over the years."
Most respondents (82%) reported that they learned the identity of at
least one genetic relative. Among this subpopulation, 10% identified a biological grandparent, 10% identified a full or half- sibling, and 7% identified a biological father. The survey asked whether the participant
had chosen to contact any of their newly identified relatives and, if so,
the reasons for doing so. It also asked whether their discoveries resulted
in any life changes, including changes in health-related behaviors.

Guerrini says that the high number of people overall who identified
an unknown genetic relative was not unexpected, because many of those
relatives could be very distant ones. But she acknowledges that the high
number of participants who found close relatives could be skewed by the
type of people who choose to undergo relative matching in the first
place. "Unfortunately, we can't answer that question with our data,
but I'm very interested in trying to do so in future research," she says.

She adds that although these experiences appear to be interesting and
enjoyable to a large number of people, it's clear that some who are participating in these services have experienced negative outcomes. "In
future research, we'd like to better understand those outcomes and what resources could be helpful in managing them," she says.

This research was supported by the National Human Genome Research
Institute of the National Institutes of Health.

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========================================================================== Journal Reference:
1. Christi J. Guerrini, Jill O. Robinson, Cinnamon C. Bloss,
Whitney Bash
Brooks, Stephanie M. Fullerton, Brianne Kirkpatrick, Sandra
Soo-Jin Lee, Mary Majumder, Stacey Pereira, Olivia Schuman,
Amy L. McGuire. Family secrets: Experiences and outcomes of
participating in direct-to-consumer genetic relative-finder
services. The American Journal of Human Genetics, 2022; DOI:
10.1016/j.ajhg.2022.01.013 ==========================================================================

Link to news story: https://www.sciencedaily.com/releases/2022/02/220224112657.htm

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