NEW YORK — Most people who have taken advantage of services to find genetic relatives have learned the identity of a new genetic relative, an experience many said in a new survey was positive or neutral. However, a small portion, particularly individuals who learned they were donor-conceived, regretted their experience.
A number of direct-to-consumer genetic testing companies offer genetic relative finder services that match people who have undergone testing to relatives who have also undergone testing. But the effect of such services on those who use it has not been well studied, researchers from Baylor College of Medicine said.
They surveyed more than 23,000 people who were recruited through FamilyTreeDNA to ask about their experiences with genetic relative finder services. As they reported in the American Journal of Human Genetics on Thursday, the Baylor-led team found that about 82 percent of respondents learned the identity of at least one genetic relative and that 61 percent learned something new about themselves or their relatives, including possible disruptive information.
"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," first author Christi Guerrini from of the Center for Medical Ethics and Health Policy at Baylor said in a statement.
Guerrini and her colleagues emailed more than 1 million FamilyTreeDNA customers and database participants to invite them to take their survey, which was open for eight days. After filtering out incomplete responses and responses from people who did not use a genetic relative finder service, the researchers amassed 23,196 survey responses.
Most respondents were white, just more than half were female, most had completed higher education, and they had a mean age of 63. This profile, the researchers noted, is in line with other reports on users of DTC genetic testing companies.
About half the respondents took advantage of genetic relative finder services out of curiosity or to better build out their family tree. Others, meanwhile, did so as they knew they were adopted and wanted to find genetic relatives.
Most respondents did learn the identify of a genetic relative. About 10 percent of those who did learned of a biological grandparent, 10 percent of a full or half-sibling, and 7 percent of a biological father, though other identified relatives were more distant. Most respondents further said they tried to contact at least one of their newly identified genetic relatives, and if that relative was a child or sibling, they almost always responded.
Survey respondents also largely said the new information had a net positive or neutral impact on their lives and that they did not regret their decision to use the genetic relative finder service. Many further said they recommended it to others.
However, the researchers noted that a portion of survey respondents had high decisional regret. In particular, individuals who learned through the genetic relative finder they were donor-conceived reported the highest decisional regret, a net-negative impact on their lives, and "not feeling like themselves."
These negative outcomes, Guerrini said, need to be more thoroughly explored. "In future research, we'd like to better understand those outcomes and what resources could be helpful in managing them," she added.