In many countries, prenatal testing for certain fetal abnormalities is offered via publicly funded screening programs. The concept of reproductive autonomy is regarded as providing a justificatory basis for many such programs. The purpose of this study is to re‐examine the normative basis of public prenatal screening for fetal abnormalities by changing our perspective from that of autonomy to obligation. After clarifying the understanding of autonomy adopted in the justification for public prenatal screening programs, we identify two problems concerning this (...) justification: first, the extent to which the government is obliged to meet this demand is not evident; and, second, it is not clear whether the provision of public screening is the most appropriate way to promote autonomy. Next, to tackle these problems, we focus on Onora O’Neill’s argument of rights and obligations. Drawing on this argument, we show that, in addressing the problems above, it is important to change our normative perspective from rights or autonomy to obligation. Our argument will show that since the government does not have an incontrovertibly fundamental obligation to promote autonomy, this obligation needs to be constrained in terms of compatibility with other fundamental obligations. In addition, even if a government is obliged to promote autonomy to some degree, there could be more appropriate means to achieve it than providing public prenatal screening; therefore, it is not necessary for government obligations to extend to the provision of public prenatal screening. (shrink)

Smajdor invites welcome interrogation of the distance between our philosophical justifications of how we engage people in decisions about healthcare or research, and the ways we do so.1 She notes the implicit elision made between autonomy and informed consent, and argues the latter alone cannot secure the former, proposing a more flexible approach. As researchers working with people with dementia (PwD), we share Smajdor’s reservations. We argue that an autonomy worthy of respect requires not just decision-making capacity, but also authenticity; (...) the ability to determine for oneself what is good for oneself.2 Furthermore, our relationships support or undermine both capacity and authenticity, and autonomous expression manifests throughout evolving relationships. This invites us to view respect differently—as an ongoing conversation with another person, capable of holding values that may move us. In Smajdor’s terminology, it requires that we recognise them. We describe how we operationalise this in our research. Three broad arguments usually support respect for autonomy.2 One—owed to JS Mill—holds that permitting individuals free choice promotes utility of all, by helping them fulfil ideas of the good, demonstrating ‘experiments in living’. Another draws from Kant’s categorical imperative; its Formula of Humanity holds that the capacity to determine our own values gives us reason to act, and we ought, therefore, to treat others’ values with the respect we show our own. Lastly, many simply assume ‘liberal neutrality’—an intrinsic value in people being permitted to pursue the …. (shrink)