How Should Health Data Be Used?: Privacy, Secondary Use, and Big Data Sales
How Should Health Data Be Used?: Privacy, Secondary Use, and Big Data Sales
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DOI：
10.1017/s0963180115000614
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发表时间：
2016-04-01
影响因子：
1.8
通讯作者：
Kaplan, Bonnie
中科院分区：
文献类型：
--
作者：
Kaplan, Bonnie
电子健康记录、数据共享、大数据、数据挖掘和二次使用为改善健康和医疗保健提供了令人兴奋的机会，同时也加剧了隐私问题。两个关于出售处方数据的法庭案件，美国的Sorrell案和英国的Source案，提出了什么是隐私和公共利益的问题;它们提供了一个机会，可以对数据隐私进行道德分析，将数据商品化以供销售和所有，将公共和私人数据相结合，将数据用于研究，以及透明度和同意。这些相互交织的问题涉及对大数据的利弊的讨论，并触及个人与集体或公共利益、研究（或更广泛地说，创新）与隐私、个人与机构权力、身份与身份和认证以及虚拟与真实的个人和背景信息的共同二重性。透明性、灵活性和问责制是评估适当、明智和合乎道德的数据使用和用户所必需的，因为有些数据比其他数据更符合社会规范和价值观。
Electronic health records, data sharing, big data, data mining, and secondary use are enabling exciting opportunities for improving health and healthcare while also exacerbating privacy concerns. Two court cases about selling prescription data, the Sorrell case in the U.S. and the Source case in the U.K., raise questions of what constitutes privacy and public interest; they present an opportunity for ethical analysis of data privacy, commodifying data for sale and ownership, combining public and private data, data for research, and transparency and consent. These interwoven issues involve discussion of big data benefits and harms and touch on common dualities of the individual versus the aggregate or the public interest, research (or, more broadly, innovation) versus privacy, individual versus institutional power, identification versus identity and authentication, and virtual versus real individuals and contextualized information. Transparency, flexibility, and accountability are needed for assessing appropriate, judicious, and ethical data uses and users, as some are more compatible with societal norms and values than others.