Billings P R, Kohn M A, de Cuevas M, Beckwith J, Alper J S, Natowicz M R
Department of Medicine, California Pacific Medical Center, San Francisco 94120.
Am J Hum Genet. 1992 Mar;50(3):476-82.
Genetic discrimination refers to discrimination directed against an individual or family based solely on an apparent or perceived genetic variation from the "normal" human genotype. We describe here the results of a case history study designed to assess whether or not genetic discrimination exists. Using the above definition of genetic discrimination and applying stringent criteria for case selection, we find that genetic discrimination exists and is manifested in many social institutions, especially in the health and life insurance industries. Stigmatization, and denial of services or entitlements to individuals who have a genetic diagnosis but who are asymptomatic or who will never become significantly impaired, is noted. Follow-up comprehensive studies on the significance and varieties of genetic discrimination are needed. In order to avoid creating a new social underclass based on genetic discrimination (the "asymptomatic ill"), existing and future genetic testing or screening programs need review by medical, scientific, legal, and social policy experts, as well as the public, and may require modification.
基因歧视是指仅仅基于与“正常”人类基因型明显的或被认为的基因变异而针对个人或家庭的歧视。我们在此描述一项病例史研究的结果,该研究旨在评估基因歧视是否存在。使用上述基因歧视的定义并应用严格的病例选择标准,我们发现基因歧视确实存在,并且在许多社会机构中都有体现,尤其是在健康和人寿保险行业。我们注意到,对于那些有基因诊断但无症状或永远不会显著受损的人,存在污名化以及拒绝为其提供服务或权益的情况。需要对基因歧视的意义和种类进行后续的全面研究。为了避免基于基因歧视制造一个新的社会下层阶级(“无症状患者”),现有的和未来的基因检测或筛查项目需要医学、科学、法律和社会政策专家以及公众进行审查,并且可能需要进行修改。