Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Victoria, Australia
Monash Bioethics Centre, Monash University, Clayton, Victoria, Australia.
J Med Ethics. 2024 Jan 23;50(2):102-107. doi: 10.1136/jme-2023-109070.
Over the past decade, non-invasive prenatal testing (NIPT) has been adopted into routine obstetric care to screen for fetal sex, trisomies 21, 18 and 13, sex chromosome aneuploidies and fetal sex determination. It is predicted that the scope of NIPT will be expanded in the future, including screening for adult-onset conditions (AOCs). Some ethicists have proposed that using NIPT to detect severe autosomal AOCs that cannot be prevented or treated, such as Huntington's disease, should only be offered to prospective parents who intend to terminate a pregnancy in the case of a positive result. We refer to this as the 'conditional access model' (CAM) for NIPT. We argue against CAM for NIPT to screen for Huntington's disease or any other AOC. Next, we present results from a study we conducted in Australia that explored NIPT users' attitudes regarding CAM in the context of NIPT for AOCs. We found that, despite overall support for NIPT for AOCs, most participants were not in favour of CAM for both preventable and non-preventable AOCs. Our findings are discussed in relation to our initial theoretical ethical theory and with other comparable empirical studies. We conclude that an 'unconditional access model' (UAM), which provides unrestricted access to NIPT for AOCs, is a morally preferable alternative that avoids both CAM's fundamental practical limitations and the limitations it places on parents' reproductive autonomy.
在过去的十年中,非侵入性产前检测 (NIPT) 已被纳入常规产科护理,以筛查胎儿性别、21 三体、18 三体、13 三体、性染色体非整倍体和胎儿性别鉴定。预计未来 NIPT 的范围将扩大,包括筛查成人发病的疾病 (AOCs)。一些伦理学家提出,使用 NIPT 检测无法预防或治疗的严重常染色体 AOC,如亨廷顿病,只应提供给打算在阳性结果时终止妊娠的准父母。我们将其称为 NIPT 的“有条件准入模式”(CAM)。我们反对使用 NIPT 来筛查亨廷顿病或任何其他 AOC 的 CAM。接下来,我们展示了我们在澳大利亚进行的一项研究的结果,该研究探讨了 NIPT 用户在 AOC 背景下对 CAM 的态度。我们发现,尽管大多数参与者总体上支持 NIPT 用于 AOC,但他们并不赞成针对可预防和不可预防的 AOC 采用 CAM。我们的研究结果与我们最初的理论伦理理论以及其他类似的实证研究进行了讨论。我们得出结论,提供 AOC 的 NIPT 无限制准入的“无条件准入模式”(UAM)是一种更可取的替代方案,既避免了 CAM 的根本实践局限性,也避免了它对父母生殖自主权的限制。