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首页> 美国卫生研究院文献>Journal of Law and the Biosciences >It depends whose data are being shared: considerations for genomic data sharing policies
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It depends whose data are being shared: considerations for genomic data sharing policies

机译：这取决于要共享的数据：基因组数据共享策略的注意事项

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There is an urgent need for consistent data sharing policies that promote the advancement of science while respecting the values and interests of those providing their genetic data for research. Responding to the article of Jalayne J. Arias, Genevieve Pham-Kanter, and Eric G. Campbell, ‘The Growth and Gaps of Genetic Data Sharing Policies in the United States’, this commentary further explores the challenges of human subjects’ protection in existing data sharing policies. We will elaborate on the need for data sharing policies to accommodate variation in individual and group preferences around data sharing and privacy concerns by comparing our previously published data on patients’ and parents’ consent to data sharing and attitudes about privacy to data from focus groups with HIV-positive, underserved individuals who were asked about their willingness to participate in genetic research and share their data broadly. These studies support the observation of Arias, Pham-Kanter, and Campbell that researchers, and funding agencies will need to balance the privacy interests of groups as well as individuals in future genomic data sharing policies.
机译：迫切需要一贯的数据共享政策，以促进科学的发展，同时尊重为研究提供遗传数据的人们的价值和利益。在回应Jalayne J. Arias，Genevieve Pham-Kanter和Eric G. Campbell的文章“美国遗传数据共享政策的增长与空白”时，此评论进一步探讨了现有人类受试者保护的挑战数据共享政策。通过比较我们先前发布的有关患者和父母同意数据共享的数据以及隐私权的态度与焦点小组的数据，我们将详细阐述数据共享政策的需要，以适应围绕数据共享和隐私问题的个人和团体偏好的变化。艾滋病毒呈阳性，服务水平低下的人被询问是否愿意参加基因研究并广泛分享其数据。这些研究支持对Arias，Pham-Kanter和Campbell的观察，研究人员和资助机构将需要在未来的基因组数据共享策略中平衡群体和个人的隐私利益。

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