A critical view on using "life not worth living" in the bioethics of assisted reproduction.

IF 2.3 2区 哲学 Q1 ETHICS Medicine Health Care and Philosophy Pub Date : 2024-06-01 Epub Date: 2024-02-16 DOI:10.1007/s11019-023-10191-7
Agnes Elisabeth Kandlbinder
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Abstract

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies.

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在辅助生殖的生命伦理学中使用 "不值得活下去的生命 "的批判性观点。
本文批判性地探讨了生命之初生命伦理学领域如何将 "不值得活下去"(LNWL)及相关概念用作道德要求应用胚胎植入前遗传学诊断(PGD)和/或种系基因组编辑(GGE)的论据基础。有观点认为,在生命之初的案例中,客观的 LNWL 概念在很大程度上并不可靠,无法得出决定性的规范理由,从而构成有意为人父母者的道德责任。主观框架被认为更适于确定无法律约束力原则,但在生命之初的案例中却无法使用,因为还没有主体。此外,本文还指出了在普遍使用明确的案例范例方面存在的概念和社会政治问题。本文的结论是,不能从无法律约束力的概念基础中推导出使用 PGD 和 GGE 的道德要求,因为以道德为由限制生育自由需要有可以可靠确定的强有力的理由。在确定 PGD 和/或 GGE 的道德允许性时,对未来福祉进行有教育意义的预测可能仍然有用。我们建议,由于主观经验在生命之初生命伦理学的规范性中具有重要意义,该学科应更 积极地实现对残疾人的包容。这涉及到研究设计、引用实践和语言选择等方面,以提高社会对遗传技术生殖伦理辩论的可及性。
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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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