Sydney Health Ethics, The University of Sydney, Sydney, New South Wales, Australia
Sydney Health Ethics, The University of Sydney, Sydney, New South Wales, Australia.
J Med Ethics. 2022 Dec;48(12):1060-1067. doi: 10.1136/medethics-2021-107343. Epub 2021 Jul 9.
Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Contemporary practice in medical genetics has, understandably, distanced itself from such programmes. However, as RCS becomes more widespread, gains public funding and uses expanded gene panels, there are concerns that such programmes could be perceived as eugenic either in intent or outcome. The typical response to the eugenics critique of RCS is to emphasise the voluntary nature of both participating in screening and making subsequent reproductive choices. While safeguarding individuals' freedom to choose in relation to screening is essential, we consider this response inadequate. By examining the specific ethical wrongs committed by eugenics in the past, we argue that to avoid the perception of RCS being a form of eugenics it is essential to attend to the broader normative context in which reproductive decisions occur. Furthermore, ethical RCS programmes must recognise and respond to their potential to shift societal norms that shape individual reproductive choices.
生殖遗传携带者筛查(RCS),无论其家族史或血统如何,向任何人提供时,都受到了它是一种优生学形式的批评。优生学描述了一系列旨在利用遗传科学来改善人群遗传组成的实践。该术语与 20 世纪在不同国家实施的一系列不道德计划有关。可以理解的是,当代医学遗传学实践已经远离了此类计划。然而,随着 RCS 的普及、获得公共资金和使用扩展的基因面板,人们担心这些计划在意图或结果上可能被视为优生学。对 RCS 的优生学批评的典型回应是强调参与筛查和随后进行生殖选择的自愿性质。虽然保护个人在筛查方面的选择自由至关重要,但我们认为这种回应是不够的。通过检查过去优生学犯下的具体伦理错误,我们认为,为了避免 RCS 被视为一种优生学形式,必须关注生殖决策发生的更广泛的规范背景。此外,伦理 RCS 计划必须认识到并应对它们可能改变塑造个人生殖选择的社会规范的潜力。