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Original Research

Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review

, &
Pages 1053-1065 | Published online: 26 Sep 2014
 

Abstract

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.

Financial & competing interests disclosure

This study is kindly funded by the Interfaculty Council for Development Co-operation (IRO) of the University of Leuven and the FP7-project 835 EUcelLEX (grant agreement no. 601806). The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No writing assistance was utilized in the production of this manuscript.

Key issues

  • Sharing genomic data through public databases may challenge the mechanisms established to protect rights of research participants.

  • Public and research participants’ perspectives toward genomic data sharing should be sought and adequately addressed in the course of governing genomic data sharing.

  • Individuals understand the potential benefits accrued via data sharing while remaining wary of the potential concerns that might endanger their personal rights or social benefits. Nevertheless, they favor genomic data sharing when they believe benefits outweigh potential risks.

  • Key concepts such as privacy are construed in heterogeneous ways among the public, necessitating a tailored approach to be adopted to protect privacy in the face of genomic data sharing.

  • Research participants and the public are concerned about the breadth of data access, as well as subsequent research purposes, suggesting de-identification of data may not resolve all the research participants’ concerns.

  • The role of consent mechanism addresses a number of concerns of the public and research participants in the context of genomic data sharing, including representing a sign of respect and a mechanism to maintain control on data.

  • Implementing robust oversight mechanisms and introducing higher transparency into the data sharing policies by the institutions will build an atmosphere conducive to building trust among the public and research participants.

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