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

Authors :
Haeusermann T
Fadda M
Blasimme A
Tzovaras BG
Vayena E
Source :
AJOB empirical bioethics [AJOB Empir Bioeth] 2018 Oct-Dec; Vol. 9 (4), pp. 207-221. Date of Electronic Publication: 2018 Dec 31.
Publication Year :
2018

Abstract

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

Details

Language :
English
ISSN :
2329-4523
Volume :
9
Issue :
4
Database :
MEDLINE
Journal :
AJOB empirical bioethics
Publication Type :
Academic Journal
Accession number :
30596357
Full Text :
https://doi.org/10.1080/23294515.2018.1550123