PDF(Pubmed)
Abstract：
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.
摘要：
收集和共享基因组数据以推进健康研究的举措正在广泛和加速。这些努力中的商业利益，虽然至关重要，可能会侵蚀公众的信任和提供个人基因组数据的意愿，这些举措所依赖的。在商业参与的背景下，了解公众对为健康研究提供基因组数据的态度至关重要。PRISMA对六个在线学术数据库的指导搜索使用与公众对管理层商业行为者的态度有关的主要数据，确定了113项定量和定性研究。收藏,access,以及生物样本库和基因组数据的使用。商业利益的存在产生了围绕同意的相互关联的公众担忧，隐私和数据安全，信任科学和科学家，利益共享,以及健康数据的所有权和控制权。因此，需要仔细考虑监管和数据治理以及访问政策，以保持公众对基因组健康计划的信任和支持。
