Literature DB >> 30596357

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

Tobias Haeusermann1, Marta Fadda2, Alessandro Blasimme2, Bastian Greshake Tzovaras3, Effy Vayena2.   

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.

Entities:  

Keywords:  Data sharing; direct-to-consumer genetic testing; ethics; genomics; privacy; qualitative research

Mesh:

Year:  2018        PMID: 30596357     DOI: 10.1080/23294515.2018.1550123

Source DB:  PubMed          Journal:  AJOB Empir Bioeth        ISSN: 2329-4515


  5 in total

1.  Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.

Authors:  Sarah C Nelson; Deborah J Bowen; Stephanie M Fullerton
Journal:  Am J Hum Genet       Date:  2019-06-13       Impact factor: 11.025

2.  Share and protect our health data: an evidence based approach to rare disease patients' perspectives on data sharing and data protection - quantitative survey and recommendations.

Authors:  Sandra Courbier; Rebecca Dimond; Virginie Bros-Facer
Journal:  Orphanet J Rare Dis       Date:  2019-07-12       Impact factor: 4.123

3.  Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives.

Authors:  Rachele M Hendricks-Sturrup; Christine Y Lu
Journal:  J Pers Med       Date:  2019-05-09

4.  Who's afraid of genetic tests?: An assessment of Singapore's public attitudes and changes in attitudes after taking a genetic test.

Authors:  Ross Cheung; Shreshtha Jolly; Manoj Vimal; Hie Lim Kim; Ian McGonigle
Journal:  BMC Med Ethics       Date:  2022-01-26       Impact factor: 2.652

5.  SVAT: Secure outsourcing of variant annotation and genotype aggregation.

Authors:  Miran Kim; Su Wang; Xiaoqian Jiang; Arif Harmanci
Journal:  BMC Bioinformatics       Date:  2022-10-01       Impact factor: 3.307

  5 in total

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