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11/12/2018

A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States

External Link - Source: PLOS

The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. 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. While many participants expressed concern that genomic and medical information would be revealed to others, respondents frequently seemed to conflate privacy, confidentiality, control, and security. People varied widely in how much control they wanted over the use of data.