Naomi Scheinerman

Over the past several decades in which access to abortion has become increasingly restricted, parents' autonomy in medical decision‐making in the realms of fetal care and neonatal intensive care has expanded. Today, parents can decide against invasive medical interventions at gestational ages where abortions are forbidden, even in cases where neonates are expected to be seriously ill. Although a declared state interest in protecting the lives of fetuses and newborns contributes to justifications for restricting women's autonomy with regards to abortion, it does not fully explain this discrepancy. We believe that social portrayals of women as complying with or shirking their reproductive function play a major role in explaining it. The growing divide between a woman's rights as a reproductive being and as a parent suggest that abortion restriction is rooted in a historical societal desire for women to serve as reproducers and in the corresponding fear of them abandoning this allotted role in pursuit of social equality. The Dobbs v. Jackson (2022) decision is not based in a view of abortion as a medical act occurring between a doctor and patient, as Roe v. Wade (1973) did, but decision‐making about fetal therapy or NICU care is still viewed as occurring between a doctor and patient or surrogate because in this act a woman is seen as fulfilling her role as mother.

In the eighteenth century, David Hume posited, “And though the philosopher may live remote from business[,]... philosophy, if carefully cultivated by several, must gradually diffuse itself throughout the whole society, and bestow a similar correctness on every art and calling.” While asking a lot, Hume nonetheless articulates some of the hopes I brought to The Hastings Center two years ago. In my work here, I often consider how to best allocate time to ask both, what is the moral message? and, how can we use that moral message to better the world?

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6–8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest to offer moral guidance on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness.

We argue why interpretability should have primacy alongside empiricism for several reasons: first, if machine learning models are beginning to render some of the high-risk healthcare decisions instead of clinicians, these models pose a novel medicolegal and ethical frontier that is incompletely addressed by current methods of appraising medical interventions like pharmacological therapies; second, a number of judicial precedents underpinning medical liability and negligence are compromised when ‘autonomous’ ML recommendations are considered to be en par with human instruction in specific contexts; third, explainable algorithms may be more amenable to the ascertainment and minimisation of biases, with repercussions for racial equity as well as scientific reproducibility and generalisability. We conclude with some reasons for the ineludible importance of interpretability, such as the establishment of trust, in overcoming perhaps the most difficult challenge ML will face in a high-stakes environment like healthcare: professional and public acceptance.

Society's distribution of goods is not always just: there is a significant lack of jobs and resources accessible to even the hardest of workers, and even the most motivated can have trouble discovering that fulfilling calling. Furthermore, the most needed jobs may, for many, not be the most fulfilling ones, while the most fulfilling jobs may not always better society. Amidst such observations, I find myself reflecting on my own life choices. Working at The Hastings Center is an exceedingly rare opportunity for which I am extremely grateful: it allows me to combine my life passion and my hopes for a moral society with allocating my time in ways that are both fulfilling momentarily and hopefully contribute to a future career in the field.