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围绕携带者检测的法律和监管问题。

Legal and regulatory issues surrounding carrier testing.

作者信息

Charo R A

机构信息

University of Wisconsin Law School, Madison 53706.

出版信息

Clin Obstet Gynecol. 1993 Sep;36(3):568-97. doi: 10.1097/00003081-199309000-00013.

DOI:10.1097/00003081-199309000-00013
PMID:8403605
Abstract

Genetic testing has arrived, probably earlier than patients and physicians need. For the moment, professional societies are taking the lead in monitoring the quality of physician education and laboratory services. The federal government will soon take over the role of monitoring the quality of genetic test kits themselves, but the most significant development will be the evolving physician-patient relationship in the context of primary and prenatal care. As of 1992, it is probably not necessary for physicians to educate their patients about the availability of genetic tests unless there is a specific indication of genetic disease in the family. However, should a patient ask for such information or testing, today's physician would have a duty to know enough about the current status of carrier testing to be able to respond to the requests or make a proper referral. In addition, as the reliability of such tests increase and their costs decrease, physicians may arrive at a moment when some sort of patient education is required, at least for the most common disorders. The recent court decisions securing the right to abortion mean that patients will continue to have the moral and legal right to assert their privilege to plan their families and, where possible, to avoid genetic impairments in their children. Physicians will have the sensitive task of helping patients to achieve their personal goals regarding such family planning, while not overwhelming patients with confusing or frightening information.

摘要

基因检测已经出现,可能比患者和医生的需求来得更早。目前,专业协会正在带头监测医生教育和实验室服务的质量。联邦政府很快将接手监测基因检测试剂盒本身质量的工作,但最重要的发展将是在初级保健和产前保健背景下不断演变的医患关系。截至1992年,除非家族中有特定的遗传疾病迹象,医生可能没有必要告知患者基因检测的可及性。然而,如果患者询问此类信息或检测,当今的医生有责任充分了解携带者检测的现状,以便能够回应这些请求或进行适当的转诊。此外,随着此类检测的可靠性提高和成本降低,医生可能会在某个时刻需要进行某种形式的患者教育,至少针对最常见的疾病。最近保障堕胎权利的法院判决意味着患者将继续拥有主张其规划家庭的特权的道德和法律权利,并在可能的情况下避免子女出现基因缺陷。医生将面临一项敏感任务,即帮助患者实现其关于此类计划生育的个人目标,同时又不会用令人困惑或恐惧的信息使患者不堪重负。

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Legal and regulatory issues surrounding carrier testing.围绕携带者检测的法律和监管问题。
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