PRENATAL TESTING FOR GENETIC DISABILITY

遗传缺陷产前检测

• 批准号: 2430547
• 负责人: ERIK F PARENS
• 金额: $ 10.8万
• 依托单位: HASTINGS CENTER, INC.
• 依托单位国家: 美国
• 财政年份: 1996
• 资助国家: 美国
• 起止时间: 1996-06-01 至 1999-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2430547
• 关键词: Alzheimer's disease; Downs syndrome; behavioral /social science research tag; caregivers; clinical research; deafness; disabling disease; ethics; family structure /dynamics; genetic counseling; genetic disorder; health care cost /financing; health care policy; health economics; homosexuals; human data; induced abortion; prenatal care; prenatal diagnosis; psychological values; schizophrenia; sex; sickle cell anemia; social psychology; social service; socioeconomics

Increasingly, prospective parents will be able to get prenatal genetic tests for characteristics that, though not disease related, some persons nonetheless consider socially "disabling," such as female gender or male homosexuality. Coupled with conflicting attitudes toward people with medical disabilities, the emerging ability to test, genetically, for socially disabling conditions lends new urgency to questions already posed by the disability community. Namely, what values ought to be considered, and what purposes ought to be promoted, with prenatal genetic testing? The standard response has been that the proper purposes of such testing are to reduce suffering and enhance the autonomous choice of prospective parents. But is this standard answer truly adequate? This project investigates the nature of disability to enlarge that answer and to articulate, for public policy, the purposes for which emerging testing capabilities ought ethically to be used. To analyze the nature of disability, the project participants-including experts from disability studies, medical geneticists, genetic counselors, philosophers, and others--must begin by examining two distinctions that are not well addressed in the literature: the distinction between nondisease and disease traits, and the distinction between medical and social disabilities. Examining these distinctions will (1) help assess the disability community's claim that they are discriminated against because those without disabilities misunderstand these distinctions, and (2) help craft a public policy statement that will use those terms in a nondiscriminatory way. The project will draw on the social scientific data already available and on the expertise of project participants to examine the psychological, social, and economic dimensions of the impact of disability on families and society through a series of case studies in sickle cell anemia, Down syndrome, Alzheimer disease, schizophrenia, deafness, male homosexuality, and gender. In tandem with its investigation of the already existing data concerning what the impact of people with disabilities is, the project will explore the normative question of how families and society ought to think about and respond to different kinds of disability. The primary output of the project will be a policy statement on the nature of disability and about the values that ought to be considered in decisions about prenatal testing aimed at the elimination of disabling conditions.

越来越多的未来父母将能够获得产前基因 测试特征，尽管与疾病无关，但有些人 尽管如此，还是可以考虑社交上的“残疾”，比如女性或男性 同性恋。再加上对那些患有 医学残疾，新出现的基因测试能力， 社交障碍状况给已经提出的问题带来了新的紧迫性 被残障人士所认可。也就是说，应该考虑什么价值， 在产前基因检测方面，应该促进什么目的？ 标准的回答是，这种测试的正确目的 是为了减少痛苦，增强对未来的自主选择 父母。但这个标准答案真的足够了吗？这个项目 调查残疾的性质以扩大这一答案并 对于公共政策，阐明新出现的测试的目的 从道德上讲，应该使用这些能力。 为了分析残疾的性质，项目参与者--包括 来自残疾研究的专家，医学遗传学家，遗传顾问， 哲学家和其他人必须从检查两个区别开始 在文献中没有得到很好的解决： 非疾病和疾病特征，以及医学和疾病之间的区别 社交障碍。检查这些区别将(1)有助于评估 残疾人团体声称他们受到歧视 因为那些没有残疾的人误解了这些区别， (2)帮助起草一份公共政策声明，在 非歧视性的方式。 该项目将利用已有的社会科学数据和 根据项目参与者的专业知识来检查心理， 残疾对家庭的影响的社会和经济层面 通过一系列镰状细胞性贫血的案例研究和社会 综合症，阿尔茨海默病，精神分裂症，耳聋，男性同性恋， 和性别。 在调查关于以下方面的现有数据的同时 该项目将探索对残疾人的影响是什么 家庭和社会应该如何思考的规范性问题 并对不同类型的残疾做出反应。 该项目的主要成果将是一份关于性质的政策声明 关于残疾的价值，以及应该在 关于旨在消除残疾的产前测试的决定 条件。