Privacy Protection and Genetic Testing

隐私保护和基因检测

• 批准号: 1227230
• 负责人: Amalia Miller
• 金额: $ 11.57万
• 依托单位: Rand Corporation
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-09-01 至 2014-08-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=1227230&HistoricalAwards=false
• 关键词: Privacy; Protection; Genetic; Testing

This research will study how state regulation protecting the privacy of genetic information affects the market for genetic tests. It will exploit variation in the timing of different state laws as a natural experiment and compare changes in genetic testing outcomes over time between states that adopt privacy protections and states that do not. The outcomes of interest are the availability of genetic testing and use of genetic tests by adults. The research will also study the effects of genetic privacy protection on public health through preventive care, such as cancer screening and surgical interventions, as well as health outcomes. The results of this research can provide empirical evidence on the impact of different privacy rules on technology diffusion in general, and on genetic privacy in particular. As medical science advances, the uses of genetic information will increase, in ways that could be both beneficial and harmful to individuals. Clinical applications of genetic information may improve public health by targeting preventive care and interventions where they will be more effective. At the same time, as more links are uncovered between genes and personality traits and future health risks, individuals may suffer from discrimination based on their genetic information. Privacy protection is the main policy tool available to limit those harms and optimal policy will balance the risks and benefits. This research will provide the first empirical evidence on the effect of different types of privacy safeguards. Since the question of privacy protection is not a binary, all-or-nothing, choice, it is important to understand what features of privacy rules are most beneficial from the view of consumers and which are most costly to producers. The study will therefore explore the separate and joint effects of different provisions within privacy laws to identify policies that are most favorable to technology diffusion.

这项研究将研究如何保护遗传信息隐私的州监管影响遗传检测的市场。它将利用不同州法律的时机的差异作为自然实验，并比较采用隐私保护和不采用的州的州之间的基因检测结果的变化。感兴趣的结果是成人的基因检测和基因检测的使用。该研究还将通过预防性护理（例如癌症筛查和手术干预措施）以及健康结果来研究遗传隐私保护对公共卫生的影响。这项研究的结果可以提供有关不同隐私规则对技术扩散的影响，尤其是对遗传隐私的影响的经验证据。随着医学的发展，遗传信息的使用将以对个人有益和有害的方式增加。遗传信息的临床应用可以通过针对预防性护理和更有效的干预措施来改善公共卫生。同时，由于基因和人格特征与未来健康风险之间的更多联系，个人可能会根据其遗传信息而遭受歧视。隐私保护是限制这些危害的主要政策工具，最佳政策将平衡风险和利益。这项研究将提供有关不同类型隐私保护措施的影响的第一个经验证据。由于隐私保护问题不是二进制，全有或无所事事的选择，因此从消费者的角度来了解隐私规则的哪些特征是最有益的，对生产者来说最昂贵。因此，该研究将探讨隐私法律中不同规定的独立和共同影响，以确定最有利于技术扩散的政策。