Is a patient willing to give consent to participate in genomics research? What about genetic testing in clinical care? Privacy concerns are a factor in both decisions.

To learn where things stand on individuals’ views on privacy and genetic data, researchers analyzed 53 studies involving the perspectives of 47,974 participants.1

“The thing that was most surprising to me is how little we know about this issue,” says Ellen Wright Clayton, MD, JD, the study’s lead author and co-founder of Vanderbilt University’s Center for Biomedical Ethics and Society in Nashville, TN.

The researchers concluded that “the picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps.” Findings include the following:

• When asked specifically “Are you worried about genetic privacy?” the general public, patients, and professionals frequently said yes.

“In many cases, however, that question was posed poorly or only in the most general terms,” says Clayton.

• Many participants expressed concern that genomic and medical information would be revealed to others.

“Respondents frequently seemed to conflate privacy, confidentiality, control, and security,” notes Clayton.

• Views varied widely in how much control participants wanted over the use of data.

In general, they were more concerned about use by employers, insurers, and the government, and less concerned about researchers and commercial entities.

“Privacy is a complex topic, involving, among other things, issues of how people want to be seen, how much control they have and want, and what kinds of harms they are concerned about,” says Clayton.

Privacy often is not an absolute. “People often share information in order to get other goods. But the idea of tradeoffs has only recently been explored,” says Clayton.

Despite these complexities, many investigators simply asked people if they were worried about privacy. Much more attention was paid to employment and insurance discrimination than any other topic.

“At a minimum, such explorations should place genetics in the broader data context,” says Clayton.

Specifically, more data are needed on what tradeoffs people are willing to make, and why. “We need a much more nuanced understanding of what people think, if these data are to be helpful in developing policy,” says Clayton.

REFERENCE

1. Clayton EW, Halverson CM, Sathe NA, et al. A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States. PLoS One 2018; 13(10):e0204417.

SOURCE

• Ellen Wright Clayton, MD, JD, Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, TN. Phone: (615) 322-1186. Email: ellen.clayton@vumc.org.