Privacy Protection, Personalized Medicine, and Genetic Testing

• 成果类型: Article
• 署名作者: Miller, Amalia R.; Tucker, Catherine
• 署名单位: University of Virginia; IZA Institute Labor Economics; National Bureau of Economic Research; Massachusetts Institute of Technology (MIT)
• 刊物名称: MANAGEMENT SCIENCE
• ISSN/ISSBN: 0025-1909
• DOI: 10.1287/mnsc.2017.2858
• 发表日期: 2018
• 页码: 4648-4668
• 关键词: Healthcare; Treatment; information systems; application contexts/sectors; regulation

摘要

This paper explores how state genetic privacy laws affect the diffusion of personalized medicine, using data on genetic testing for cancer risks. State genetic privacy regimes employ and combine up to three alternative approaches to protecting patient privacy: Rules requiring that an individual is notified about potential privacy risks; rules restricting discriminatory usage of genetic data by employers or insurance companies; and rules limiting redisclosure without the consent of the individual. We find empirically that approaches to genetic and health privacy that give users control over redisclosure encourage the spread of genetic testing, but that notification deters individuals from obtaining genetic tests. We present some evidence that the latter reflects costs imposed on the supply of genetic testing by hospitals. We find no effects of state genetic antidiscrimination laws on genetic testing rates.