Artificial intelligence and machine learning have the potential to revolutionize the delivery of health care. But designing machine learning‐based decision support systems is not a merely technical challenge. It also requires attention to bioethical principles. As AI and machine learning advance, bioethical frameworks need to be tailored to address the problems that these evolving systems might pose, and the development of these automated systems also needs to be tailored to incorporate bioethical principles.

Surely since the Enlightenment, if not before, the study of mind has centered principally on how man achieves a “true” knowledge of the world. Emphasis in this pursuit has varied, of course: empiricists have concentrated on the mind’s interplay with an external world of nature, hoping to find the key in the association of sensations and ideas, while rationalists have looked inward to the powers of mind itself for the principles of right reason. The objective, in either case, has been (...) to discover how we achieve “reality,” that is to say, how we get a reliable fix on the world, a world that is, as it were, assumed to be immutable and, as it were, “there to be observed.”This quest has, of course, had a profound effect on the development of psychology, and the empiricist and rationalist traditions have dominated our conceptions of how the mind grows and how it gets its grasp on the “real world.” Indeed, at midcentury Gestalt theory represented the rationalist wing of this enterprise and American learning theory the empiricist. Both gave accounts of mental development as proceeding in some more or less linear and uniform fashion from an initial incompetence in grasping reality to a final competence, in one case attributing it to the work out of internal processes or mental organization, and in the other to some unspecified principle of reflection by which—whether through reinforcement, association, or conditioning—we came to respond to the world “as it is.” There have always been dissidents who challenged these views, but conjectures about human mental development have been influenced far more by majoritarian rationalism and empiricism than by these dissident voices. Jerome Bruner is research professor of psychology at New York University, where he is also serving as Meyer Visiting Professor of Law. His most recent book, Acts of Meaning, appeared in 1990. In 1987 he received the Balzan Prize for “a lifetime contribution to the study of human psychology.”. (shrink)

When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better‐informed decisions has led to the development of dementia‐specific advance directives, in which people are given tools to help them communicate what their preferences are while they (...) are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia‐specific directives and addresses some of the criticisms raised about them. (shrink)

Dignity is a fundamental concept, but its meaning is not clear. This paper attempts to clarify the term by analysing and reconnecting two meanings of dignity: humanitas and dignitas. Humanitas refers to citizen values that protect individuals as equal to one another. Dignitas refers to aesthetic values embedded in genres of sociality that relate to differences between people. The paper explores these values by way of an empirical ethical analysis of practices of washing psychiatric patients in nursing care. Nurses legitimate (...) the washing of reluctant patients with reference to dignity. The analysis shows the intertwinement of humanitas and dignitas that gives dignity its fundamental meaning. (shrink)

Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they might (...) consider a “good life” with dementia. Specific proposals, such as payment for dementia care managers and new systems to support high‐quality, symptom‐based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia. (shrink)

The ethical dimensions of an aging society are larger than the experience of chronic illness, the moral concerns of health care professionals, or the allocation of health care resources. What, then, is the role of bioethics in an aging society, beyond calling attention to these problems? Once we’ve agreed that aging is morally important and that population‐level aging across wealthy nations raises ethical concerns that cannot be fixed through transhumanism or other appeals to transcend aging and mortality through technology, what (...) is our field’s contribution? We argue that it is time for bioethics to turn toward social justice and problems of injustice and that part of doing so is articulating a concept of good citizenship in an aging society that goes beyond health care relationships. (shrink)

As of 2019, ten jurisdictions in the United States—Oregon, Washington, Montana, Vermont, California, Colorado, the District of Columbia, Hawaii, New Jersey, and Maine—have authorized physicians to...

Dignity plays a central role in current thinking about law and human rights, but there is sharp disagreement about its meaning. Combining conceptual precision with a broad historical background, Michael Rosen puts these controversies in context and offers a novel, constructive proposal. “Penetrating and sprightly...Rosen rightly emphasizes the centrality of Catholicism in the modern history of human dignity. His command of the history is impressive...Rosen is a wonderful guide to the recent German constitutional thinking about human dignity...[Rosen] is in general (...) an urbane and witty companion, achieving his aim of accessibly written philosophy.” —Samuel Moyn, The Nation “[An] elegant, interesting and lucid exploration of the concept of dignity...Drawing on classical, liberal and Catholic traditions, Rosen hopes to rehabilitate dignity to its rightful place near the centre of moral thought...Rosen's admirable book deserves wide attention from political theorists, jurisprudes and political philosophers.” —Simon Blackburn, Times Higher Education “Dignity deserves to be widely read, not only for its intrinsic interest, but also as a corrective to the habit of discussing such topics in abstraction from their social context. Whether or not one agrees with Rosen's arguments, there can be no doubt he has widened our horizons.” —Rae Langton, Times Literary Supplement. (shrink)

Both mainstream and disability bioethics sometimes contend that the self-assessment of disabled people about their own well-being is distorted by adaptive preferences that are only held because other, better options are unavailable. I will argue that both of the most common ways of understanding adaptive preferences—the autonomy-based account and the well-being account—would reject blanket claims that disabled people’s QOL self-assessment has been distorted, whether those claims come from mainstream bioethicists or from disability bioethicists. However, rejecting these generalizations for a more (...) nuanced view still has dramatic implications for the status quo in both health policy and clinical ethics. (shrink)

If you developed Alzheimer disease, would you want to go all the way to the end of what might be a decade‐long course? Some would; some wouldn't. Options open to those who choose to die sooner are often inadequate. Do‐not‐resuscitate orders and advance directives depend on others' cooperation. Preemptive suicide may mean giving up years of life one would count as good. Do‐it‐yourself methods can fail. What we now ask of family and clinicians caring for persons with dementia, and of (...) patients given no better option than to go on with lives they may not want, is unacceptable. To explore how one might better control one's own dying and avoid burdening others with overwhelming care and morally painful choices, we propose a thought experiment: an advance directive implant that would enable persons with early dementia, while competent, to arrange their own deaths without the subsequent intervention of anyone else. (shrink)

Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life‐sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a terminally (...) ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory. With a focus on the U.S. context, this landscape review considers the status of provisions that would legally permit people facing dementia to hasten death with appropriate support from medical professionals. This review can be used to plan and guide clinical and legal practitioner discussion and policy development concerning evolving questions not fully covered by existing medical decision‐making provisions. (shrink)

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end‐of‐life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the “six‐month rule” that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range (...) of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision‐making capacity. This essay encourages scholars and policy‐makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia. (shrink)