The University of Iowa College of Law, 130 Byington Road, #280 BLB, Iowa City, IA, 52242, USA.
Eur J Hum Genet. 2019 Mar;27(3):340-348. doi: 10.1038/s41431-018-0293-1. Epub 2018 Nov 6.
Fear of genetic discrimination has led individuals worldwide to avoid medically recommended genetic testing and participation in genomics research, causing potential health effects as research and clinical care are stymied. In response, many countries have adopted policies that regulate how insurers, such as life, disability, or critical illness insurers, can underwrite using genetic test results. This article presents a comparison of policies in the United Kingdom, Canada, and Australia, through analysis of interviews with 59 key stakeholders representing insurance, government, advocacy, academia, and genetics. While the ultimate policy of each country is different, the policy motivations and issues raised share commonalities across the countries, particularly around themes of fairness, usefulness of genetic information, and the determination of actuarial fairness.
对遗传歧视的担忧导致全球各地的个人回避医学推荐的基因检测和参与基因组学研究，从而阻碍了研究和临床护理的发展，可能会产生潜在的健康影响。为此，许多国家都采取了相关政策，以规范保险公司（如寿险、残疾险或重疾险保险公司）如何使用基因检测结果进行承保。本文通过对代表保险、政府、宣传、学术界和遗传学的 59 位主要利益相关者的访谈进行分析，对英国、加拿大和澳大利亚的政策进行了比较。虽然每个国家的最终政策不同，但各国的政策动机和提出的问题具有共同性，特别是在公平性、遗传信息的有用性和精算公平性的确定等主题上。
