Beyond cultural stereotyping: views on end-of-life decision making among religious and secular persons in the USA, Germany, and Israel.

BACKGROUND: End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes. METHODS: The paper is based on a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel (n = 82). Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion. RESULTS: Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system. CONCLUSIONS: As the group discussions indicate, there are no clear-cut positions anchored in "nationality," "culture," or "religion." Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed.

Respecting the Dignity of Children with Disabilities in Clinical Practice.

Prevailing philosophies about parental and other caregiver responsibilities toward children tend to be protectionist, grounded in informed benevolence in a way that countenances rather than circumvents intrusive paternalism. And among the kinds of children an adult might be called upon to parent or otherwise care for, children with disabilities figure among those for whom the strongest and snuggest shielding is supposed be deployed. In this article, we examine whether this equation of securing well-being with sheltering by protective parents and other care-givers should unreflectively be adopted for disabled children. We also consider why healthcare providers might reasonably be reluctant to yield to this principle, even if parents instinctively suppose that protectionism is the parenting policy that best serves their disabled child's interest. We contend that caregivers owe children with disabilities at least as much, and possibly more, respect for self-governance than other children need. In spite of disabled children's vulnerability and even in view of it, we argue that they should be accorded not only welfare rights to well-being but at least a modified version of liberty rights as well. Healthcare providers are especially favorably positioned to facilitate the latter response. The main components of respectful caregiving can come into conflict with one another, but we present some priorities that advise against adopting a protectionist account of parenting rights, or at least against accepting protectionist views that focus parenting narrowly on shaping ideas about the child's welfare. In sum, caring for a disabled child, we argue, involves more than creating conditions that will afford her contentment and comfort over the course of life.

Infanticide, moral status and moral reasons: the importance of context.

Giubilini and Minerva ask why birth should be a critical dividing line between acceptable and unacceptable reasons for terminating existence. Their argument is that birth does not change moral status in the sense that is relevant: the ability to be harmed by interruption of one's aims. Rather than question the plausibility of their position or the argument they give, we ask instead about the importance to scholarship or policy of publishing the article: does it to any extent make a novel or needed addition to the literature? Giubilini and Minerva's argument is remarkably similar to one advanced by Michael Tooley in 'Abortion and Infanticide,' almost 40 years ago. There have been immense changes in the intervening 40 years: in the ability to diagnose conditions early in pregnancy, in genetics and in the availability of in vitro fertilization; in understanding of the capabilities of persons with disabilities; in law; in economic support and access to healthcare for pregnant women and their children; in social customs and arrangements; and even in philosophy, with developments in feminist thought, bioethics and cognitive science. Some of these changes have been for the better, but others, such as the unravelling of social safety nets, have arguably been for the worse. Any or all of these changes might give rise to moral reasons for the relevance of birth that were not available 40 years ago. These changes might also be relevant to the identification of cases, if any, in which 'after-birth abortion' might be considered. If context is relevant to the applicability of moral reasons-as for theorists of justice in the non-idealised world it surely should be-it is questionable whether a view of the birth-line that ignores contextualising change can be adequate.

Achieving Meaningful Access to Medicaid.

Federal and state budgetary constraints continually challenge Medicaid. The effects of benefit cuts are common: long waiting lists for community-based services, skeletonized drug formularies with unstable access to long-term prescriptions, no psychiatric therapy for people immobilized by depression, and no more than fourteen days of acute hospitalization. Reimbursements may be so low that providers cannot hire qualified staff and must reduce services, close facilities, or refuse to take Medicaid altogether. Misguided efficiency policies may afflict some groups of patients as well. Decisions to narrow access rights to publicly funded health care promote the perception that more broadly inclusive programs would be unwisely and unfairly generous. They also risk characterizing disability rights as "special," confined to a narrow class of people who charitably ought not to be expected to provide for themselves. In contrast, on a philosophical view we have been exploring-one that addresses problems of justice under circumstances of injustice by pursuing rather than reducing inclusion-efforts like these are unjust.

Predictive genetic testing: congruence of disability insurers' interests with the public interest.

This article argues that, under existing jurisprudence, the disability insurance business will be harmed, not benefited, from broad access to the results of genetic testing identifying people with higher than species-typical genetic propensities for illness.

Perspectives on the Meaning of "Disability".

The meaning of "disability" has shifted with changes in public policy. Half a century ago, Congress was convinced that narrow determinations of disability are easy for physicians to make. But with the advent of universal civil rights protection against disability discrimination in the US, deciding whether particular individuals are disabled became increasingly contentious, until Congress intervened. What should now be addressed in each case is not whether the functionally compromised person is severely disabled enough to exercise a right, but whether mitigating interventions and reasonable accommodations can together achieve equitable access for that person.

Human rights, civil rights: prescribing disability discrimination prevention in packaging essential health benefits.

This article explores rights-based approaches to protecting disabled people against inequities in access to health care services. Understanding health care as a human right, as is found in the UN Convention on the Rights of People with Disabilities (CRPD), fails to provide theoretical machinery for responding to certain pressing challenges. An alternative account, understanding health care as a civil right, proves more promising. This latter approach then is applied to the right to health care under the U.S. Affordable Care Act (ACA), which contains provisions that could be antithetical to, and thus fail to comply with, the nondiscrimination standard of meaningful access to health care benefits.

On the possibility and desirability of constructing a neutral conception of disability.

Disagreement about the proper attitude toward disability proliferates. Yet little attention has been paid to an important meta-question, namely, whether "disability" is an essentially contested concept. If so, recent debates between bioethicists and the disability movement leadership cannot be resolved. In this essay I identify some of the presumptions that make their encounters so contentious. Much more must happen, I argue, for any discussions about disability policy and politics to be productive. Progress depends on constructing a neutral conception of disability, one that neither devalues disability nor implies that persons with disabilities are inadequate. So, first, I clear away the conceptual underbrush that makes us think our idea of disability must be value-laden. Second, I sketch some constituents of, and constraints upon, a neutral notion of disability.