In this series of essays, The Road Less Traveled, noted bioethicists share their stories and the personal experiences that prompted them to pursue the field. These memoirs are less professional chronologies and more descriptions of the seminal touchstone events and turning points that led—often unexpectedly—to their career path.

This essay brings together work I have done over the past 10 years: on the nature of ethics, on the purpose of ethics, and on its foundations in a way that, I hope, as E.M. Forster put it, connects “the prose and the passion.” I deploy lessons learned in this process to identify and face what I believe to be crucial challenges to science and to freedom (as defended by, among others, Cicero, Pete Seeger, Bob Dylan, Thomas Hobbes, John Stuart Mill, and Bertrand Russell). Finally I consider threats to freedom of a different sort, posed by the creation and dissemination of “alternative facts” and by what is sometimes called “super” or “full” artificial intelligence (AI).

This article examines two questions. (1) If prospective living kidney donors knew of the lifetime risk of end-stage renal disease (ESRD) in their remaining kidney, then would they be as willing to give it up? and (2) What should transplant organizations and physicians be telling those who express an interest in donating a kidney about risk? Based on the principle that prospective donors must be fully informed of the risk, I raise the issue of a possible obstacle to closing the gap between the availability and need of transplantable kidneys. Some strategies are offered to address this problem.

The number of patients with organ failure who could potentially benefit from transplantation continues to exceed the available supply of organs. Despite numerous efforts to increase the number of donors, there remains an enormous mismatch between demand and supply. Large numbers of people still die with potentially transplantable organs remaining in situ, most frequently as a result of family objections. I argue that there are no persuasive moral arguments against mandated organ retrieval from all dead individuals who meet clinical criteria. However, because of continuing endemic prejudice in United States society and its healthcare system and the distrust this engenders, I conclude that proceeding with a policy of compulsory organ retrieval, even if morally unobjectionable, would not be warranted.

Because the demand for intensive care unit (ICU) beds exceeds the supply in general, and because of the formidable costs of that level of care, clinicians face ethical issues when rationing this kind of care not only at the point of admission to the ICU, but also after the fact. Under what conditions—if any—may patients be denied admission to the ICU or removed after admission? One professional medical group has defended a rule of “first come, first served” in ICU admissions, and this approach has numerous moral considerations in its favor. We show, however, that admission to the ICU is not in and of itself guaranteed; we also show that as a matter of principle, it can be morally permissible to remove certain patients from the ICU, contrary to the idea that because they were admitted first, they are entitled to stay indefinitely through the point of recovery, death, or voluntary withdrawal. What remains necessary to help guide these kinds of decisions is the articulation of clear standards for discontinuing intensive care, and the articulation of these standards in a way consistent with not only fiduciary and legal duties that attach to clinical care but also with democratic decision making processes.

Under the current conditions of scarcity of transplantable livers, difficult decisions need to be made about access. There is a growing consensus that it is morally justified to give people with ARESLD lower priority than those whose need is not self-caused. The purpose of this article is to critically examine the conditions under which such prioritization is morally justified, by challenging arguments put forth by Walter Glannon and Daniel Brudney. There are serious theoretical and practical problems with these views, which have to do with the nature and scope of the (putative) moral duty not to contribute to the competition for scarce transplantable livers, and the difficulty in determining whether people are responsible for their weakness or even wickedness of character. These problems need to be resolved if we are to be morally justified in determining access based on causal and moral responsibility for being in need.

This article addresses the prioritization questions that arise when people attempt to institutionalize reasonable ethical principles and create guidelines for microlevel decisions. I propose that this instantiates an incommensurability problem, and suggest two different kinds of practical solutions for dealing with this issue.

In their daily clinical work, healthcare professionals generally apply what seems to be a double standard for the responsibility of patients. On the one hand, patients are encouraged to take responsibility for lifestyle changes that can improve their chances of good health. On the other hand, when patients fail to follow such recommendations, they are not held responsible for the failure. This seeming inconsistency is explained in terms of the distinction between task responsibility and blame responsibility. The double standard for responsibility is shown to be epistemologically rational, ethically commendable, and therapeutically advantageous. However, this non-blaming approach to patient responsibility is threatened by proposals to assign lower priority in healthcare to patients who are themselves responsible for their disease. Such responsibility-based priority setting requires that physicians assign blame responsibility to their patients, a practice that would run into conflict with the ethical foundations of the patient–physician relationship. Therefore, such proposals should be rejected.

Although national guidelines exist for evaluating the eligibility of potential living donors and for procuring their informed consent, no special protections or considerations exist for potential living donors who are incarcerated. Human research subject protections in the United States are codified in the Federal Regulations, 45 CFR 46, and special protections are given to prisoners. Living donor transplantation has parallels with human subject research in that both activities are performed with the primary goal of benefiting third parties. In this article, we describe what special considerations should be provided to prisoners as potential living donors using a vulnerabilities approach adapted from the human research subject protection literature.

This article reexamines the “prostitution objection” to paid surrogacy, and argues that rebuttals to this objection fail to focus on surrogates as embodied persons. This failure is based on the false distinction between “selling one’s reproductive services” and “selling one’s body.” To ground the analysis of humans as embodied persons, this article uses Kant’s late ethical theory, which develops the conceptual framework for understanding human beings as embodied selves. Literature on surrogacy commonly emphasizes that all Kantian duties heed to the categorical prohibition to treat persons as mere means. What this literature leaves out is that this imperative commands us more specifically to engage ourselves and others as embodied persons. This article aims to relate this point to a specific issue in assisted reproduction. It argues that a Kantian account of human beings as embodied persons prohibits paid surrogacy on exactly the same grounds as it prohibits prostitution.

Recent highly publicized privacy breaches in healthcare and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This article focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or a simplified method of communicating risks during the consent process.

Palliative care has had a long-standing commitment to teaching medical students and other medical professionals about pain management, communication, supporting patients in their decisions, and providing compassionate end-of-life care. Palliative care programs also have a critical role in helping patients understand medical conditions, and in supporting them in dealing with pain, fear of dying, and the experiences of the terminal phase of their lives. We applaud their efforts to provide that critical training and fully support their continued important work in meeting the needs of patients and families. Although we appreciate the contributions of palliative care services, we have noted a problem involving some palliative care professionals’ attitudes, methods of decisionmaking, and use of language. In this article we explain these problems by discussing two cases that we encountered.

Fear of life, fear of death, and fear of causing death form a combination that prevents reasoned changes in laws concerning end-of-life situations. This is shown systematically in this article using the methods of conceptual analysis. Prevalent fears are explicated and interpreted to see how their meanings differ depending on the chosen normative stance. When the meanings have been clarified, the impact of the fears on the motivations and justifications of potential legislative reforms are assessed. Two main normative stances are evoked. The first makes an appeal to individual self-determination, or autonomy, and the second to the traditional professional ethics of physicians. These views partly share qualifying elements, including incurability and irreversibility of the patient’s medical condition, proximity of death, the unbearable nature of suffering, and issues of voluntariness further shade the matter. The conclusion is that although many motives to change end-of-life laws are admirable, they are partly contradictory, as are calls for autonomy and appeals to professional ethics; to a degree that good, principled legislative solutions remain improbable in the foreseeable future.

Dissecting Bioethics, edited by Tuija Takala and Matti Hayry, welcomes contributions on the conceptual and theoretical dimensions of bioethics. The department is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison people’s actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are particularly appreciated. To submit a paper or to discuss a suitable topic, contact Tuija Takala at [email protected].

Neuroethics Now welcomes articles addressing the ethical application of neuroscience in research and patient care, as well as its impact on society.

This section features original work on pathographies—i.e., (auto)biographical accounts of disease, illness, and disability—that provide narrative inquiry relating to the personal, existential, psychological, social, cultural, spiritual, political, and moral meanings of individual experience. Editors are: Nathan Carlin and Therese Jones. For submissions, contact Nathan Carlin at: [email protected].