Prince Anya E R, Uhlmann Wendy R, Suter Sonia M, Scherer Aaron M
University of Iowa College of Law.
Department of Internal Medicine, Division of Genetic Medicine; Department of Human Genetics; Center for Bioethics and Social Sciences in Medicine, University of Michigan School of Medicine.
Risk Manag Insur Rev. 2021 Winter;24(4):341-365. doi: 10.1111/rmir.12195. Epub 2021 Nov 19.
Globally, due to public concerns of genetic discrimination, some countries and insurance industries have adopted policies restricting insurer use of genetic information, such as the US Genetic Information Nondiscrimination Act (GINA). This study reports on combined analysis of two surveys assessing public knowledge of GINA and concerns of genetic discrimination in a diverse U.S. sample (N=1616). We focus on whether occupation, genetic testing history, and insurance status are correlated with knowledge of GINA or concerns of discrimination. While bivariate analysis identified some populations with higher subjective/objective knowledge and concern relative to counterparts, multivariable regression identified very few significant associations with outcomes of interest. Overall, this study highlights lack of awareness and understanding of GINA, even among subpopulations hypothesized to have greater knowledge of the law. These findings have implications for the broader debate around insurer use of genetic information.
在全球范围内，由于公众对基因歧视的担忧，一些国家和保险业已采取政策限制保险公司使用基因信息，例如美国的《基因信息非歧视法案》（GINA）。本研究报告了对两项调查的综合分析，这两项调查评估了美国一个多样化样本（N = 1616）中公众对GINA的了解以及对基因歧视的担忧。我们关注职业、基因检测史和保险状况是否与对GINA的了解或对歧视的担忧相关。虽然双变量分析确定了一些相对于其他人群在主观/客观知识和担忧方面较高的人群，但多变量回归确定与感兴趣的结果有显著关联的情况很少。总体而言，本研究强调了对GINA缺乏认识和理解，即使在假设对该法律有更多了解的亚人群中也是如此。这些发现对围绕保险公司使用基因信息的更广泛辩论具有启示意义。
