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Genetic Privacy Concerns Run Deep Among Research Study Participants

NEW YORK (GenomeWeb) – Most people will say they are worried about genetic privacy when asked, but the source of their concern isn't always known, according to a new analysis.

A team led by researchers at Vanderbilt University conducted a literature review to tease out what is known about individuals' concerns about genetic privacy and factors that influence their perspectives, especially as the National Institutes of Health now requires investigators it funds to obtain broad consent for genomic data sharing.

As they reported today in PLOS One, the researchers found that people were largely worried about how their data could be used by employers, insurers, and the government. However, the researchers did not find much about the actual source of those worries.

"The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps," first author and Vanderbilt researcher Ellen Clayton said in a statement. "Much more needs to be learned about which concerns about genetic privacy matter most to people as well as the social forces that influence their views in order to develop policies that create the trust necessary to allow people to make optimal use of advances in genomics."

The researchers combed through the literature to come up with an initial set of about 7,000 papers that touched on people's views on genetic privacy, which they whittled down to 202. Of those, 149 were excluded as they focused solely on discrimination. This left 53 studies in the analysis.

These studies explored the responses of 47,974 participants and were published between 2010 and 2017. Eighteen of the studies focused on the views of the general public and direct-to-consumer genetic testing users, while 31 focused on patients and their families or research participants.

In general, the researchers found that investigators largely asked participants whether they were worried about privacy, but did not delve into why they were concerned. As part of the Electronic Medical Records and Genomics (eMERGE) study, investigators found that 90 percent of patients thought health information privacy was important and 64 percent were worried about it.

In qualitative studies, participants rarely brought up privacy concerns on their own. In one study, about a third said it worried them, but only after they were prompted.

Participants also tended to conflate privacy with related factors like confidentiality, control, and security, the researchers found. Many participants wanted a say in how their information was used. In particular, a study of 18 early adopters from the Personal Genome Project found that all wanted control over their data, including its dissemination. In another study at Baylor College of Medicine of 15 people with epilepsy, 87 percent wanted control over sharing their data and all of them were against sharing their information with employers or insurers.

That concern, the researchers noted, was widespread. However, they also found that few studies examined what people thought of the Genetic Information Non-Discrimination Act or other laws that provide protections, a gap they found glaring.

Participants were also worried about how government and particularly law enforcement agencies might use such data — and these studies were conducted prior to revelations about police use of a genetic genealogy database to home in on the Golden State Killer, the researchers noted.

The researchers also found the literature often overlooked factors that could influence participants' concerns. Still, they reported that non-whites tended to have greater concerns about privacy. For instance, a survey of 1,253 people with bipolar disorder found 41.9 percent of blacks were concerned about a loss of privacy, as compared to 24.6 percent of whites. Younger participants also tended to have more privacy-related concerns than older participants.

Still, many people were willing to accept the risk to take part in scientific research. Further, as the authors noted, having a better understanding of their worries and why some people set these concerns aside to take part in research could improve research best practices and trustworthiness.