A considerable literature has emerged around the idea of using ‘personal responsibility’ as an allocation criterion in healthcare distribution, where a person's being suitably responsible for their health needs may justify additional conditions on receiving healthcare, and perhaps even limiting access entirely, sometimes known as ‘responsibilisation’. This discussion focuses most prominently, but not exclusively, on ‘luck egalitarianism’, the view that deviations from equality are justified only by suitably free choices. A superficially separate issue in distributive justice concerns the two–way relationship (...) between health and other social goods: deficits in health typically undermine one's abilities to secure advantage in other areas, which in turn often have further negative effects on health. This paper outlines the degree to which this latter relationship between health and other social goods exacerbates an existing problem for proponents of responsibilisation (the ‘harshness objection’) in ways that standard responses to this objection cannot address. Placing significant conditions on healthcare access because of a person's prior responsibility risks trapping them in, or worsening, negative cycles where poor health and associated lack of opportunity reinforce one another, making further poor yet ultimately responsible choices more likely. It ends by considering three possible solutions to this problem. (shrink)

There is an ongoing increase in the use of mobile health technologies that patients can use to monitor health-related outcomes and behaviours. While the dominant narrative around mHealth focuses on patient empowerment, there is potential for mHealth to fit into a growing push for patients to take personal responsibility for their health. I call the first of these uses ‘medical monitoring’, and the second ‘personal health surveillance’. After outlining two problems which the use of mHealth might seem to enable us (...) to overcome—fairness of burdens and reliance on self-reporting—I note that these problems would only really be solved by unacceptably comprehensive forms of personal health surveillance which applies to all of us at all times. A more plausible model is to use personal health surveillance as a last resort for patients who would otherwise independently qualify for responsibility-based penalties. However, I note that there are still a number of ethical and practical problems that such a policy would need to overcome. The prospects of mHealth enabling a fair, genuinely cost-saving policy of patient responsibility are slim. (shrink)

The idea of using responsibility in the allocation of healthcare resources has been criticized for, among other things, too readily abandoning people who are responsible for being very badly off. One response to this problem is that while responsibility can play a role in resource allocation, it cannot do so if it will leave those who are responsible below a “sufficiency” threshold. This paper considers first whether a view can be both distinctively sufficientarian and allow responsibility to play a role (...) even for those who will be left with very poor health. It then draws several further distinctions that may affect the application of responsibility at this level. We conclude that a more plausible version of the sufficientarian view is to allow a role for responsibility where failure to do so will leave someone else who is not responsible below the sufficiency threshold. However, we suggest that individuals must exhibit “sufficient responsibility” in order for this to apply, involving both a sufficient level of control and an avoidable failure to respond adequately to reasons for action. (shrink)

As the rising costs of lifestyle-related diseases place increasing strain on public healthcare systems, the individual’s role in disease may be proposed as a healthcare rationing criterion. Literature thus far has largely focused on retrospective responsibility in healthcare. The concept of prospective responsibility, in the form of a lifestyle contract, warrants further investigation. The responsibilisation in healthcare debate also needs to take into account innovative developments in mobile health technology, such as wearable biometric devices and mobile apps, which may change (...) how we hold others accountable for their lifestyles. Little is known about public attitudes towards lifestyle contracts and the use of mobile health technology to hold people responsible in the context of healthcare. This paper has two components. Firstly, it details empirical findings from a survey of 81 members of the United Kingdom general public on public attitudes towards individual responsibility and rationing healthcare, prospective and retrospective responsibility, and the acceptability of lifestyle contracts in the context of mobile health technology. Secondly, we draw on the empirical findings and propose a model of prospective intention-based lifestyle contracts, which is both more aligned with public intuitions and less ethically objectionable than more traditional, retrospective models of responsibility in healthcare. (shrink)

When it comes to determining how healthcare resources should be allocated, there are many factors that could—and perhaps should—be taken into account. One such factor is a patient’s responsibility for his or her illness, or for the behavior that caused it. Policies that take responsibility for the unhealthy lifestyle or its outcomes into account—responsibility-sensitive policies—have faced a series of criticisms. One holds that agents often fail to meet either the control or epistemic conditions on responsibility with regard to their unhealthy (...) lifestyles or their outcomes. Another holds that even if patients sometimes are responsible for these items, we cannot know whether a particular patient is responsible for them. In this article, we propose a type of responsibility-sensitive policy that may be able to surmount these difficulties. Under this type of policy, patients are empowered to change to a healthier lifestyle by being given what we call a ‘Golden Opportunity’ to change. Such a policy would not only avoid concerns about patients’ fulfilment of conditions on responsibility for their lifestyles, it would also allow healthcare authorities to be justified in believing that a patient who does not change her lifestyle is responsible for the unhealthy lifestyle. We conclude with a discussion of avenues for further work, and place this policy in the broader context of the debate on responsibility for health. (shrink)

Some healthcare systems are said to be grounded in solidarity because healthcare is funded as a form of mutual support. This article argues that health care systems that are grounded in solidarity have the right to penalise some users who are responsible for their poor health. This derives from the fact that solidary systems involve both rights and obligations and, in some cases, those who avoidably incur health burdens violate obligations of solidarity. Penalties warranted include direct patient contribution to costs, (...) and lower priority treatment, but not typically full exclusion from the healthcare system. We also note two important restrictions on this argument. First, failures of solidary obligations can only be assumed under conditions that are conducive to sufficiently autonomous choice, which occur when patients are given ‘Golden Opportunities’ to improve their health. Second, because poor health does not occur in a social vacuum, an insistence on solidarity as part of healthcare is legitimate only if all members of society are held to similar standards of solidarity. We cannot insist upon, and penalise failures of, solidarity only for those who are unwell, and who cannot afford to evade the terms of public health. (shrink)

It is unclear whether someone’s responsibility for developing a disease or maintaining his or her health should affect what healthcare he or she receives. While this dispute continues, we suggest that, if responsibility is to play a role in healthcare, the concept must be rethought in order to reflect the sense in which many health-related behaviours occur repeatedly over time and are the product of more than one agent. Most philosophical accounts of responsibility are synchronic and individualistic; we indicate here (...) what paying more attention to the diachronic and dyadic aspects of responsibility might involve and what implications this could have for assessments of responsibility for health-related behaviour. (shrink)

In this article, we provide an ethical analysis of the first porcine cardiac xenotransplant, performed in Maryland, USA in early 2022. David Bennett was offered the experimental procedure after he was deemed ineligible for human heart transplantation and mechanical circulatory support, based on a history of non-compliance. It was reported that Mr Bennett’s previous instances of non-compliance were for medically non-life-threatening conditions years earlier, where the risks of non-compliance were not as high. We argue that, in Mr Bennett’s case, a (...) history of non-compliance in a different context, should not necessarily rule him ineligible for a potentially life-saving treatment now. Furthermore, using previous non-compliance to exclude individuals from donor organs may have the unintended effect of placing the burden of testing xenotransplantation on those who are already disadvantaged. We then argue that it is not enough to rely on patient consent to ethically justify xenotransplantation research. Taking a broad ethical perspective is crucial when mapping a clinical pathway for xenotransplantation. (shrink)

Epigenetic markers could potentially be used for risk assessment in risk-stratified population-based cancer screening programmes. Whereas current screening programmes generally aim to detect existing cancer, epigenetic markers could be used to provide risk estimates for not-yet-existing cancers. Epigenetic risk-predictive tests may thus allow for new opportunities for risk assessment for developing cancer in the future. Since epigenetic changes are presumed to be modifiable, preventive measures, such as lifestyle modification, could be used to reduce the risk of cancer. Moreover, epigenetic markers (...) might be used to monitor the response to risk-reducing interventions. In this article, we address ethical concerns related to personal responsibility raised by epigenetic risk-predictive tests in cancer population screening. Will individuals increasingly be held responsible for their health, that is, will they be held accountable for bad health outcomes? Will they be blamed or subject to moral sanctions? We will illustrate these ethical concerns by means of a Europe-wide research programme that develops an epigenetic risk-predictive test for female cancers. Subsequently, we investigate when we can hold someone responsible for her actions. We argue that the standard conception of personal responsibility does not provide an appropriate framework to address these concerns. A different, prospective account of responsibility meets part of our concerns, that is, concerns about inequality of opportunities, but does not meet all our concerns about personal responsibility. We argue that even if someone is responsible on grounds of a negative and/or prospective account of responsibility, there may be moral and practical reasons to abstain from moral sanctions. (shrink)

Background Concepts of health have been widely discussed in the philosophy and ethics of medicine. Parallel to these theoretical debates, numerous empirical research projects have focused on subjective concepts of health and shown their significance for individuals and society at various levels. Only a few studies have so far investigated the concepts of health of non-professionals and professionals involved in long-term home care and discussed these empirical perspectives regarding moral responsibilities. Objectives To identify the subjective concepts of the health of (...) non-professionals (care recipients, informal caregivers) and professionals (registered nurses) involved in long-term home care and to discuss them against the background of existing normative guidelines addressing non-professionals and professionals’ responsibilities and rights concerning health. Research design A qualitative design was chosen to explore subjective concepts of health. Data were collected by semi-structured interviews; content analysis was applied according to Mayring. Participants and research context Twenty-eight interviews were conducted with non-professionals and professionals in long-term home care arrangements in Northern Germany. Ethical considerations Ethics approval was obtained from the Institutional Review Board at the University Medicine Greifswald (BB123/16). Findings Non-professionals and professionals consider health as a capability that enables them to participate in social activities and live their own lives according to their preferences. The former regard health particularly as a feeling and an attitude, the latter as the absence of disease with a focus on mental and emotional well-being. Both groups highlight the unsurpassable value of health and the personal responsibility for it. Discussion Normative guidelines applicable to practice in long-term home care discuss responsibilities and rights unevenly and raise several problems regarding non-professionals and professionals’ subjective concepts of health. Conclusion Individuals’ concepts of health are relevant for the subsequent interpretation of rights and responsibilities and should, thus, be reflected upon to address health-related needs effectively. (shrink)

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that the aim of OPS is consistent with the proper goals of medicine to promote well-being, and therefore could ethically be offered to non-binary adults in principle; there are additional equity-based reasons to offer OPS to non-binary adults as a group; and the ethical defensibility (...) of facilitating individual requests for OPS from non-binary adults also depends on other relevant considerations, including the balance of potential benefits over harms for that specific patient, and whether the patient’s request is substantially autonomous. Although the broadly principlist ethical approach we take can be used to analyse other cases of non-binary adults requesting OPS apart from the case we evaluate, we highlight that the outcome will necessarily depend on the individual’s context and values. However, such clinical provision of OPS should ideally be within the context of a properly designed research study with long-term follow-up and open publication of results. (shrink)