Applying Digital Health in Cancer and Palliative Care in Europe: Policy Recommendations from an International Expert Workshop (MyPal Project).

Background: Digital health interventions are becoming increasingly important for adults, children, and young people with cancer and palliative care needs, but there is little research to guide policy and practice. Objectives: To identify recommendations for policy development of digital health interventions in cancer and palliative care. Design: Expert elicitation workshop. Setting: European clinical (cancer and palliative care, adult and pediatric), policy, technical, and research experts attended a one-day workshop in London, England, in October 2022, along with MyPal research consortium members. Methods: As part of the European Commission-funded MyPal project, we elicited experts' views on global, national, and institutional policies within structured facilitated groups, and conducted qualitative analysis on these discussions. Results/Implementation: Thirty-two experts from eight countries attended. Key policy drivers and levers in digital health were highlighted. Global level: global technology regulation, definitions, access to information technology, standardizing citizens' rights and data safety, digital infrastructure and implementation guidance, and incorporation of technology into existing health systems. National level: country-specific policy, compatibility of health apps, access to digital infrastructure including vulnerable groups and settings, development of guidelines, and promoting digital literacy. Institutional level: undertaking a needs assessment of service users and clinicians, identifying best practice guidelines, providing education and training for clinicians on digital health and safe digital data sharing, implementing plans to minimize barriers to accessing digital health care, minimizing bureaucracy, and providing technical support. Conclusions: Developers and regulators of digital health interventions may find the identified recommendations useful in guiding policy making and future research initiatives. MyPal child study Clinical Trial Registration NCT04381221; MyPal adult study Clinical Trial Registration NCT04370457.

Twin pregnancy reduction is not an 'all or nothing' problem: a response to Räsänen.

In his paper, 'Twin pregnancy, fetal reduction and the 'all or nothing problem', Räsänen sets out to apply Horton's 'all or nothing' problem to the ethics of multifetal pregnancy reduction from a twin to a singleton pregnancy (2-to-1 MFPR). Horton's problem involves the following scenario: imagine that two children are about to be crushed by a collapsing building. An observer would have three options: do nothing, save one child by allowing their arms to be crushed, or save both by allowing their arms to be crushed. Horton offers two intuitively plausible claims: (1) it is morally permissible not to save either child and (2) it is morally impermissible to save only one of the children, which taken together lead to the problematic conclusion that (3) if an observer does not save both children, then it is better to save neither than save only one. Räsänen applies this problem to the case of 2-to-1 MFPR, arguing ultimately that, in cases where there is no medical reason to reduce, the woman ought to bring both fetuses to term. We will argue that Räsänen does not provide adequate support for the claim, crucial to his argument, that aborting only one of the fetuses in a twin pregnancy is wrong, so the 'all or nothing' problem does not arise in this context. Furthermore, we argue that the scenario Räsänen presents is highly unrealistic because of the clinical realities of 2-to-1 MFPR, making his argument of limited use for real-life decision making in this area.

Maternal-Fetal Surgery: Does Recognising Fetal Patienthood Pose a Threat to Pregnant Women's Autonomy?

Maternal-fetal surgery (MFS) encompasses a range of innovative procedures aiming to treat fetal illnesses and anomalies during pregnancy. Their development and gradual introduction into healthcare raise important ethical issues concerning respect for pregnant women's bodily integrity and autonomy. This paper asks what kind of ethical framework should be employed to best regulate the practice of MFS without eroding the hard-won rights of pregnant women. I examine some existing models conceptualising the relationship between a pregnant woman and the fetus to determine what kind of framework is the most adequate for MFS, and conclude that an ecosystem or maternal-fetal dyad model is best suited for upholding women's autonomy. However, I suggest that an appropriate framework needs to incorporate some notion of fetal patienthood, albeit a very limited one, in order to be consistent with the views of healthcare providers and their pregnant patients. I argue that such an ethical framework is both theoretically sound and fundamentally respectful of women's autonomy, and is thus best suited to protect women from coercion or undue paternalism when deciding whether to undergo MFS.

Surrogacy and uterus transplantation using live donors: Examining the options from the perspective of 'womb-givers'.

For females without a functioning womb, the only way to become a biological parent is via assisted gestation-either surrogacy or uterus transplantation (UTx). This paper examines the comparative impact of these options on two types of putative 'womb-givers': people who provide gestational surrogacy and those who donate their uterus for live donation. The surrogate 'leases' their womb for the gestational period, while the UTx donor donates their womb permanently via hysterectomy. Both enterprises involve a significant degree of self-sacrifice and medical risk in order to enable another person(s) to become a parent by either providing gestational labour or enabling the other person to undertake gestation themselves. In this paper, we explore the burdens and the benefits from the perspective of the womb-giver in order to inform ethical debate about assisted gestation. This is a perspective that is often neglected in the bioethical discourse. With both surrogacy and UTx, when success follows the womb-giver's sacrifice, the key benefit is delivered to the intending parent(s), but as this article examines, the womb-giver may also enjoy some unique (relational) benefits as a result of their sacrifice. Ultimately, the choice of how a womb-giver lends assistance in gestation will impact on their bodily autonomy; some will prefer to carry a pregnancy and others to donate their uterus. We argue that the perspective of the womb-giver is crucial and thus far has not been afforded sufficient consideration in ethical discussion.

Reviewing the womb.

Throughout most of human history women have been defined by their biological role in reproduction, seen first and foremost as gestators, which has led to the reproductive system being subjected to outside interference. The womb was perceived as dangerous and an object which husbands, doctors and the state had a legitimate interest in controlling. In this article, we consider how notions of conflict surrounding the womb have endured over time. We demonstrate how concerns seemingly generated by the invisibility of reproduction and the inaccessibility of the womb have translated into similar arguments for controlling women, as technology increases the accessibility of the female body and the womb. Developments in reproductive medicine, from in vitro fertilisation (IVF) to surrogacy, have enabled women and men who would otherwise have been childless to become parents. Uterus transplants and 'artificial wombs' could provide additional alternatives to natural gestation. An era of 'womb technology' dawns. Some argue that such technology providing an alternative to 'natural' gestation could be a source of liberation for female persons because reproduction will no longer be something necessarily confined to the female body. 'Womb technology', however, also has the potential to exacerbate the labelling of the female body as a source of danger and an 'imperfect' site of gestation, thus replaying rudimentary and regressive arguments about controlling female behaviour. We argue that pernicious narratives about control, conflict and the womb must be addressed in the face of these technological developments.

Prenatal testing: Does reproductive autonomy succeed in dispelling eugenic concerns?

Traditionally, two main rationales for the provision of prenatal testing and screening are identified: the expansion of women's reproductive choices and the reduction of the burden of disease on society. With the number of prenatal tests available and the increasing potential for their widespread use, it is necessary to examine whether the reproductive autonomy model remains useful in upholding the autonomy of pregnant women or whether it allows public health considerations and even eugenic aims to be smuggled in under the smokescreen of autonomy. In this article I argue that if we are serious about upholding women's autonomy in the context of prenatal testing, what is needed is a model based on a more robust conception of reproductive autonomy, such as the one defended by Josephine Johnston and Rachel Zacharias as 'reproductive autonomy worth having'. While Johnston and Zacharias put forward a basic outline of this conception, I apply it to the specific case of prenatal testing and show how it responds to objections levelled against the reproductive autonomy model. I argue that adopting this kind of conception is necessary to avoid fundamental challenges to women's autonomy when it comes to prenatal screening and testing.