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“高估技术——低估后果”——对非侵入性产前检测(NIPT)处理中的风险、伦理冲突和社会差异的反思。

"Overestimated technology - underestimated consequences" - reflections on risks, ethical conflicts, and social disparities in the handling of non-invasive prenatal tests (NIPTs).

机构信息

Faculty of Social Work, Hochschule Mannheim / Mannheim University of Applied Sciences, Paul-Wittsack-Str. 10, Mannheim, Germany.

出版信息

Med Health Care Philos. 2023 Jun;26(2):271-282. doi: 10.1007/s11019-023-10143-1. Epub 2023 Mar 18.

Abstract

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.

摘要

新技术带来新的复杂性。自非侵入性产前检测(NIPT)首次问世以来,医学协会、政治和实践界一直都在努力跟上其发展的步伐。NIPT 分析来自少量血液样本的胎儿染色体。最初,NIPT 旨在检测 21 三体(唐氏综合征):而现在测序技术能够分析胎儿的整个基因组。这些技术会发现一些对孩子未来生活相关性不大的结果,从而给准父母带来新的责任结构和困境。该行业的营销策略过分强调了检测的好处,而忽略了其后果。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负面影响。本文展示了 NIPT 相关的差异、悖论和风险,描述了伦理冲突。并探讨了表明为解决问题而开发的新技术会产生新问题的迹象。在批判性思维的意义上,看似稳健的知识会被仔细审查其不确定性和模糊性。本文还分析了遗传知识和社会话语的相互作用如何不仅给准父母,也给决策者、当局和专业协会带来新的责任维度,通过审查不同的国家政策和实施计划来说明这一点。正如挪威的新 NIPT 政策所表明的那样,其后果可能令人震惊。最后,美国的一个诉讼案例说明了一个机构如何会因为 NIPT 的不准确性而面临失去其合法性的风险。

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