Genetic Privacy Is Vague, Conflated for Patients and Researchers

^{Genetic privacy is important to most people, but they might not understand what it is.}

Many patients have a vague and even confused understanding of genetic privacy and control of their data, an issue compounded by ambiguous questions from researchers, according to a new study.

In 53 United States-based studies of more than 47,000 participants, they frequently claimed to be worried about genetic privacy, according to the systematic review published yesterday in the journal PLOS One. But respondents also often conflated security, confidentiality, control and privacy, raising flags about their understanding of the issues. What’s more, the review found that researchers tended to asked questions that were “posed poorly or only in the most general terms,” limiting insights into specific genetic privacy concerns.

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“The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps,” the researchers wrote

Corresponding author Ellen W. Clayton, M.D., J.D., M.S., a law and genetics expert at Vanderbilt University’s Center for Biomedical Ethics and Society, added that, “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.”

Genetic privacy has become a hot topic in recent years for several reasons. First, research into genomic variants can lead to findings that can ultimately advance precision medicine and improve patient outcomes, sparking great activity in the field. Second, direct-to-consumer genetic testing companies such as 23andMe have produced a swell of genetic data, which they typically sell or give to third parties with customer permission. Third, broader data privacy concerns have claimed a dominant place in the public consciousness, with outcries stemming from incidents like the Facebook—Cambridge Analytica scandal.

Questions surrounding genetic privacy are particularly important for healthcare decision makers and clinicians, who are or will soon be practicing precision medicine and dealing with patients looking for guidance to navigate this new world.

In this systematic review, investigators aimed to understand concerns regarding patients’ attitudes toward genetic testing in medical care and participating in genomic research. They also sought to learn how researchers understood genetic privacy.

The examination found that participants were often concerned with their level of control over their genetic data, how third parties use their data and confidentiality, though people “varied widely” in the amount of control they wanted to retain.

Participants were more concerned about their employers, health insurers and governments using genetic data than researchers and businesses. They struck a balance in saying that the importance and potential benefits of data gathered from genetic tests superseded privacy concerns.

The authors of the review called for improving how researchers, businesses and healthcare organizations obtain consent, with an emphasis on greater disclosure of third-party use.

“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 investigators wrote.

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