Princeton University, Department of Sociology, 107 Wallace Hall, Princeton, NJ, 08544, USA.
Dartmouth College, Quantitative Social Science and affiliate, Sociology, 301E Blunt Hall, Hanover, NH, 03755, USA.
Soc Sci Med. 2021 Apr;274:113796. doi: 10.1016/j.socscimed.2021.113796. Epub 2021 Feb 24.
Advances in genomics research have led to the development of polygenic risk scores, which numerically summarize genetic predispositions for a wide array of human outcomes. Initially developed to characterize disease risk, polygenic risk scores can now be calculated for many non-disease traits and social outcomes, with the potential to be used not only in health care but also other institutional domains. In this study, we draw on a nationally-representative survey of U.S. adults to examine three sets of lay attitudes toward the deployment of genetic risk scores in a variety of medical and non-medical domains: 1. abstract belief about whether people should be judged on the basis of genetic predispositions; 2. concrete attitudes about whether various institutions should be permitted to use genetic information; and 3. personal willingness to provide genetic information to various institutions. Results demonstrate two striking differences across these three sets of attitudes. First, despite almost universal agreement that people should not be judged based on genetics, there is support, albeit varied, for institutions being permitted to use genetic information, with support highest for disease outcomes and in reproductive decision-making. We further find significant variation in personal willingness to provide such information, with a majority of respondents expressing willingness to provide information to health care providers and relative finder services, but less than a quarter expressing willingness to do so for an array of other institutions and services. Second, while there are no demographic differences in respondents' abstract beliefs about judging based on genetics, demographic differences emerge in permissibility ratings and personal willingness. Our results should inform debates about the deployment of polygenic scores in domains within and beyond medicine.
基因组学研究的进展催生了多基因风险评分，它可以对人类各种结果的遗传易感性进行数值总结。多基因风险评分最初是为了描述疾病风险而开发的，现在可以为许多非疾病特征和社会结果计算，不仅有可能用于医疗保健，还可能用于其他机构领域。在这项研究中，我们利用一项针对美国成年人的全国代表性调查，考察了三组对在各种医疗和非医疗领域使用遗传风险评分的看法：1. 人们是否应该根据遗传倾向来判断的抽象信念；2. 各种机构是否应该被允许使用遗传信息的具体态度；3. 个人向各种机构提供遗传信息的意愿。研究结果表明，这三组态度存在两个显著差异。首先，尽管几乎所有人都认为不应该根据遗传学来判断，但人们还是支持机构被允许使用遗传信息，尽管支持程度各不相同，但对疾病结果和生殖决策的支持度最高。我们还发现，个人提供此类信息的意愿存在显著差异，大多数受访者表示愿意向医疗保健提供者和相对查找服务提供信息，但愿意向其他一系列机构和服务提供信息的不到四分之一。其次，虽然在基于遗传学判断的抽象信念方面，受访者没有人口统计学差异，但在可允许性评级和个人意愿方面存在差异。我们的研究结果应该为多基因评分在医学领域内外的应用提供信息。
