“高估技术——低估后果”——对处理非侵入性产前检查(nipt)的风险、伦理冲突和社会差异的反思。

IF 2.3 2区 哲学 Q1 ETHICS Medicine Health Care and Philosophy Pub Date : 2023-06-01 DOI:10.1007/s11019-023-10143-1
Marion Baldus
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引用次数: 0

摘要

新技术带来了新的复杂性。自从非侵入性产前检查(nipt)首次引入以来,跟上复杂性的步伐是医疗社会、政治和实践的一项持续任务。nipt从少量血液样本中分析胎儿的染色体。最初,nipt的目标是检测21三体(唐氏综合症):与此同时,有测序技术能够分析未出生婴儿的整个基因组。这些发现与孩子未来生活的相关性不明确,给准父母带来了新的责任结构和困境。该行业的营销策略过分强调测试的好处,而忽视了它们的后果。本文选择了相反的路径:从被低估的后果开始,重点关注不利的发展和不利的方面。说明了与nipt相关的差异、矛盾和风险,描述了伦理冲突。研究了为解决问题而开发的新技术产生新问题的迹象。在批判性思维的意义上,看似健全的知识要仔细检查其不确定性和模糊性。它分析了遗传知识和社会话语之间的相互作用如何导致不仅对准父母,而且对决策者、当局和专业协会的责任的新维度,并通过对不同国家政策和实施方案的审查加以说明。正如挪威新的NIPT政策所显示的那样,后果可能是惊人的。最后,美国的一起诉讼说明,一个机构如何可能因nipt的不准确而丧失其合法性。
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"Overestimated technology - underestimated consequences" - reflections on risks, ethical conflicts, and social disparities in the handling of non-invasive prenatal tests (NIPTs).

New technologies create new complexities. Since non-invasive prenatal tests (NIPTs) were first introduced, keeping pace with complexity constitutes an ongoing task for medical societies, politics, and practice. NIPTs analyse the chromosomes of the fetus from a small blood sample. Initially, NIPTs were targeted at detecting trisomy 21 (Down syndrome): meanwhile there are sequencing techniques capable of analysing the entire genome of the unborn child. These yield findings of unclear relevance for the child's future life, resulting in new responsibility structures and dilemmas for the parents-to-be.The industry's marketing strategies overemphasize the benefits of the tests while disregarding their consequences. This paper chooses the opposite path: starting with the underestimated consequences, it focuses on adverse developments and downsides. Disparities, paradoxes, and risks associated with NIPTs are illustrated, ethical conflicts described. Indications that new technologies developed to solve problems create new ones are examined. In the sense of critical thinking, seemingly robust knowledge is scrutinized for uncertainties and ambiguities. It analyses how the interplay between genetic knowledge and social discourse results in new dimensions of responsibility not only for parents-to-be, but also for decision-makers, authorities, and professional societies, illustrated by a review of different national policies and implementation programmes. As shown by the new NIPT policy in Norway, the consequences can be startling. Finally, a lawsuit in the United States illustrates how an agency can risk forfeiting its legitimation in connection with the inaccuracy of NIPTs.

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来源期刊
CiteScore
4.30
自引率
4.80%
发文量
64
期刊介绍: Medicine, Health Care and Philosophy: A European Journal is the official journal of the European Society for Philosophy of Medicine and Health Care. It provides a forum for international exchange of research data, theories, reports and opinions in bioethics and philosophy of medicine. The journal promotes interdisciplinary studies, and stimulates philosophical analysis centered on a common object of reflection: health care, the human effort to deal with disease, illness, death as well as health, well-being and life. Particular attention is paid to developing contributions from all European countries, and to making accessible scientific work and reports on the practice of health care ethics, from all nations, cultures and language areas in Europe.
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