Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review. (November 2014)

• Record Type: Journal Article
• Authors: Shabani, Mahsa; Bezuidenhout, Louise; Borry, Pascal
• Is Part Of: Expert review of molecular diagnostics. Volume 14:Number 8(2014)
• Page Start: 1053
• Page End: 1065
• Publication Date: 2014-11
• Subjects: Molecular diagnosis -- Periodicals; 616.0758205
• DOI: 10.1586/14737159.2014.961917
• Languages: English
• ISSNs: 1473-7159

Abstract

<abstract> <title> <x xml:space="preserve">Abstract</x> </title> <p>Aim: Introducing data sharing practices into the genomic research arena has challenged the current mechanisms established to protect rights of individuals and triggered policy considerations. To inform such policy deliberations, soliciting public and research participants' attitudes with respect to genomic data sharing is a necessity. Method: The main electronic databases were searched in order to retrieve empirical studies, investigating the attitudes of research participants and the public towards genomic data sharing through public databases. Results: In the 15 included studies, participants' attitudes towards genomic data sharing revealed the influence of a constellation of interrelated factors, including the personal perceptions of controllability and sensitivity of data, potential risks and benefits of data sharing at individual and social level and also governance level considerations. Conclusion: This analysis indicates that future policy responses and recruitment practices should be attentive to a wide variety of concerns in order to promote both responsible and progressive research.</p> </abstract>