Genes wide open: Data sharing and the social gradient of genomic privacy

• DOI: 10.1080/23294515.2018.1550123
• Publication Date: 2018-12-31T08:19:46Z
• Authors: Tobias Haeusermann; Marta Fadda; Alessandro Blasimme; Bastian Greshake ...; Effy Vayena
• Keywords: Data Sharing; Open Science

This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results platform openSNP. In particular, we focused interviewees' understanding privacy. Participants reported that likelihood and magnitude privacy harms depend gender, ethnicity, sexual orientation, stigma associated with certain clinical conditions, existence adequate legislation, nature national health care systems. Some participants expressed view those enjoy higher socioeconomic status or are better protected by country's legislation have a responsibility share data. Our shows people data online—far from being insensitive risks—have complex social, relational, contextual