Jarrod Walshe, Brad Elphinstone, Dianne Nicol, Mark Taylor
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A systematic literature review of the 'commercialisation effect' on public attitudes towards biobank and genomic data repositories.
Initiatives that collect and share genomic data to advance health research are widespread and accelerating. Commercial interests in these efforts, while vital, may erode public trust and willingness to provide personal genomic data, upon which these initiatives depend. Understanding public attitudes towards providing genomic data for health research in the context of commercial involvement is critical. A PRISMA-guided search of six online academic databases identified 113 quantitative and qualitative studies using primary data pertaining to public attitudes towards commercial actors in the management, collection, access, and use of biobank and genomic data. The presence of commercial interests yields interrelated public concerns around consent, privacy and data security, trust in science and scientists, benefit sharing, and the ownership and control of health data. Carefully considered regulatory and data governance and access policies are therefore required to maintain public trust and support for genomic health initiatives.
期刊介绍:
Public Understanding of Science is a fully peer reviewed international journal covering all aspects of the inter-relationships between science (including technology and medicine) and the public. Public Understanding of Science is the only journal to cover all aspects of the inter-relationships between science (including technology and medicine) and the public. Topics Covered Include... ·surveys of public understanding and attitudes towards science and technology ·perceptions of science ·popular representations of science ·scientific and para-scientific belief systems ·science in schools