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避免基因灭绝:在医学和残疾社区的复杂对话中理解良好意图和优生学。

Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities.

机构信息

University of Washington School of Law, Seattle, WA, USA.

出版信息

Genet Med. 2013 Feb;15(2):95-102. doi: 10.1038/gim.2012.102. Epub 2012 Aug 16.

Abstract

The relationship between the medical and disability communities is complex and is influenced by historical, social, and cultural factors. Although clinicians, health-care researchers, and people with disabilities all work from the standpoint of the best interest of disabled individuals, the notion of what actually is "best" is often understood quite differently among these constituencies. Eugenics campaigns, legal restrictions on reproductive and other freedoms, and prenatal testing recommendations predicated on the lesser worth of persons with disabilities have all contributed toward the historic trauma experienced by the disability community, particularly with respect to medical genetics. One premise of personalized medicine is that different individuals require different solutions. Disabled persons' experiences are a reminder that these solutions can be best realized by maintaining awareness and sensitivity in a complex ethical and moral terrain. Geneticists should recognize that their research may have implications for those with disabilities; they should recognize the impact of the historical trauma of the eugenics movement, and seek to involve people with disabilities in discussions about policies that affect them. Dialogue can be messy and uncomfortable, but it is the only way to avoid the mistakes of the past and to ensure a more equitable, and healthful, future.

摘要

医学和残疾社区之间的关系是复杂的,受到历史、社会和文化因素的影响。尽管临床医生、医疗保健研究人员和残疾人都从残疾个体的最佳利益的立场出发,但这些群体对什么是“真正的最佳”的理解往往大不相同。优生运动、对生殖和其他自由的法律限制,以及基于残疾人人格较低的产前检查建议,都对残疾社区造成了历史性的创伤,尤其是在医学遗传学方面。个性化医疗的一个前提是,不同的人需要不同的解决方案。残疾人的经历提醒我们,通过在复杂的伦理和道德领域保持意识和敏感性,可以最好地实现这些解决方案。遗传学家应该认识到他们的研究可能对残疾人有影响;他们应该认识到优生运动的历史创伤的影响,并努力让残疾人参与讨论影响他们的政策。对话可能会很乱,也会让人不舒服,但这是避免过去错误的唯一途径,也是确保更公平、更健康的未来的唯一途径。

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