Most patients are concerned about the privacy of their genetic data, according to a study published in PLOS One.
Researchers from Nashville, Tenn.-based Vanderbilt University Medical Center conducted a literature review of 53 studies that investigated participants' attitudes toward real or hypothetical privacy issues related to human genetic data. In total, the 53 studies involved responses from 47,974 participants.
Many participants expressed concern that their genetic information would be revealed to others, with most citing concerns about use by employers, insurers and the government, rather than researchers or commercial entities. When participants — whether the general public, patients or professionals — were asked whether they were worried about genetic privacy, they frequently said yes.
However, the researchers argued these questions were often "posed poorly or only in the most general terms." And while most participants said they were worried, many also conflated issues related to privacy, confidentiality, control and security.
"The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps," the study authors wrote. "Importantly, little attention was paid to understanding the factors — sociocultural, relational and media — that influence people's opinions and decisions."
The study authors suggested future investigations consider which privacy issues are most salient and why, as these concerns might hinder patients from accepting genetic testing for clinical care or genomics research.
"It is also critical to identify the social practices that will make the collection and use of these data more trustworthy for participants as well as to identify the circumstances that lead people to set aside worries and decide to participate in research," the study authors concluded.