A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project.

An understanding of the ethical underpinnings of human subjects research that involves some risk to participants without anticipated direct clinical benefit-such as the kidney biopsy procedure as part of the Kidney Precision Medicine Project (KPMP)-requires a critical examination of the risks as well as the diverse set of countervailing potential benefits to participants. This kind of deliberation has been foundational to the development and conduct of the KPMP. Herein, we use illustrative features of this research paradigm to develop a more comprehensive conceptualization of the types of benefits that may be important to research participants, including respecting pluralistic values, supporting the opportunity to act altruistically, and enhancing benefits to a participant's community. This approach may serve as a model to help researchers, ethicists, and regulators to identify opportunities to better respect and support participants in future research that entails some risk to these participants as well as to improve the quality of research for people with kidney disease.

Ethical Challenges Arising in the COVID-19 Pandemic: An Overview from the Association of Bioethics Program Directors (ABPD) Task Force.

The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities.

Speak no evil? Conscience and the duty to inform, refer or transfer care.

This paper argues that the type of conscience claims made in last decade's spate of cases involving pharmacists' objections to filling birth control prescriptions and cases such as Ms. Means and Mercy Health Partners of Michigan, and even the Affordable Care Act and the Little Sisters of the Poor, as different as they appear to be from each other, share a common element that ties them together and makes them fundamentally different in kind from traditional claims of conscience about which a practical consensus emerged in the 1980s and 1990s. This difference in kind is profoundly significant; so much so, we contend, that it puts them at odds with the normative basis for protecting conscience claims in United States health care settings in the first place, making them illegitimate. Finally, we argue that, given the illegitimacy of these contemporary claims of conscience, physicians and other health professionals must honor their well-established standing obligations to provide informed consent and refer or transfer care even if the service requested or needed is at odds with their own core moral beliefs-a requirement that is in line with the aforementioned practical consensus on traditional claims of conscience.

Moral persuasion for value-laden objections to human papillomavirus vaccination.

The martial art of jiu jitsu capitalizes on the strength of a sparring partner by redirecting their momentum. Jiu jitsu persuasion similarly redirects the concerns motivating an objection in a manner that undermines the objection. This method of persuasion effectively addresses criticisms that motivate vaccine hesitancy, including moral criticisms. Critics argue that human papillomavirus vaccination causes young women to become more promiscuous. Evidence undermines this objection, but such evidence fails to persuade many objectors because of countervailing moral concerns regarding promiscuity. Healthcare professionals, therefore, need to consider supplementing evidence with moral arguments against the objection, using a framework that appeals to the core values motivating vaccine objections. A jiu jitsu model of persuasion is one such framework. By employing a jiu jitsu model healthcare professionals can facilitate collaborative, normative discussion that persuades more objectors and fulfills healthcare professionals' obligations with respect to patient care vis-à-vis vaccination.

The stigma of "mental" illness: end stage anorexia and treatment refusal.

OBJECTIVE: To answer the questions of whether psychiatric patients should ever be allowed to refuse life-sustaining treatment in favor of comfort care for a condition that is caused by a psychiatric disorder, and if so, under what conditions. METHOD: Case discussion and normative ethical and legal analysis. RESULTS: We argue that psychiatric patients should sometimes be allowed to refuse life-sustaining treatment in favor of comfort care for a condition that is caused by that psychiatric disorder and articulate the core considerations that should be taken into account when such a case arises. DISCUSSION: We also suggest that unwillingness among many, especially mental health professionals, to consider seriously both of these questions risks perpetuating stigmatization of persons with psychiatric disorders, i.e., that the "mentally" ill should not be allowed to make significant decisions for themselves-a-a stigmatization that can result in persons with mental disorders both being prevented from exercising autonomous choice even when they are capable of it, and being denied good comfort care at the end of life--care which would be offered to patients with similarly life-threatening conditions that were not deemed to be the result of "mental" illness.

"Facilitated consensus," "ethics facilitation," and unsettled cases.

In "Consensus, Clinical Decision Making, and Unsettled Cases:' David M. Adams and William J.Winslade' make multiple references to both editions of the American Society of Bioethics and Humanities (ASBH) Core Competencies for Healthcare Ethics Consultation in their discussion of two assumptions that are supposed to be at the heart of the facilitated consensus model's inability to handle unsettled cases; that is, that: 1. Consultants "should maintain a kind of moral impartiality or neutrality throughout the process," "explicitly condemn[ing] anything resembling a substantive 'ethics' recommendation, and 2. "What counts as the proper set of allowable options among which the parties are to deliberate will itself always be clearly discernible' Herein, I argue that neither of these assumptions is required by ASBH's ethics facilitation approach. I then conclude by suggesting that, despite their fundamentally mistaken interpretation of the ASBH approach-perhaps even because of it-Adams and Winslade have made two important contributions to the ethics consultation literature.

Exploring the Ethics of Stature Lengthening as Treatment for Height Dysphoria.

AIM: To promote a discussion on the ethics and justifications of stature lengthening in patients without skeletal deformity. BACKGROUND: Stature lengthening for height gain in patients without skeletal deformity has stirred controversy within the orthopedic community. However, current literature does not delineate the ethical issues surrounding this procedure. Improvements in the techniques, technology, and safety profile of stature lengthening warrant an ethical discussion to challenge, justify, and guide the use of this surgical procedure. REVIEW RESULTS: Examination of ethical issues leads to the distinction between the dual roles of stature lengthening as a treatment vs an enhancement. The primary focus on stature lengthening as treatment allows for exploration of "height dysphoria"-a psychological burden caused by a dissatisfaction with one's height-as the primary pathology that may justify surgical intervention. CONCLUSION: In our opinion, additional work is required to establish "height dysphoria" as a true pathology in order to ethically justify stature lengthening as a legitimate form of treatment. Further discussion is needed to address the ethics of stature lengthening as an enhancement. CLINICAL SIGNIFICANCE: This paper addresses salient ethical issues of stature lengthening in patients without skeletal deformity by exploring historical, contemporary, and comparative contexts. HOW TO CITE THIS ARTICLE: Lee RC, Aulisio M, Liu RW. Exploring the Ethics of Stature Lengthening as Treatment for Height Dysphoria. Strategies Trauma Limb Reconstr 2020;15(3):163-168.

Role of the ethics committee: helping to address value conflicts or uncertainties.

This article addresses two basic questions about ethics committees: why we have them, and how they might be helpful to clinicians. Our answer to the first question is twofold. First, we suggest that legal, regulatory, and professional forces drove the development of ethics committees, particularly as an alternative to litigation. Second, we argue that ethics committees arose in response to a clinical need for a formal mechanism to address some of the value conflicts and uncertainties that arise in contemporary health-care settings. We argue that this need, reflected in early high-profile legal cases, stems partly from the complex value-laden nature of clinical decision making, a pluralistic societal context, a growing recognition of the rights of individuals to live by their values, and the relevance of those values for medical decision making. In answer to the second question, we draw out three ways ethics committees might be helpful to clinicians: education, policy formation or review, and consultation. We devote the majority of our discussion to ethics consultation and its relation to the emerging area of palliative care. In so doing, we highlight three important differences: (1) the scope or range of cases for which they may be appropriate, (2) focus in any particular case, and (3) general orientation-between ethics consultation and palliative care that clinicians should take into account in deciding to seek the assistance of either or both.

Clinical ethics consultation: examining how American and Japanese experts analyze an Alzheimer's case.

BACKGROUND: Few comparative studies of clinical ethics consultation practices have been reported. The objective of this study was to explore how American and Japanese experts analyze an Alzheimer's case regarding ethics consultation. METHODS: We presented the case to physicians and ethicists from the US and Japan (one expert from each field from both countries; total = 4) and obtained their responses through a questionnaire and in-depth interviews. RESULTS: Establishing a consensus was a common goal among American and Japanese participants. In attempting to achieve consensus, the most significant similarity between Japanese and American ethics consultants was that they both appeared to adopt an "ethics facilitation" approach. Differences were found in recommendation and assessment between the American and Japanese participants. In selecting a surrogate, the American participants chose to contact the grandson before designating the daughter-in-law as the surrogate decision-maker. Conversely the Japanese experts assumed that the daughter-in-law was the surrogate. CONCLUSION: Our findings suggest that consensus building through an "ethics facilitation" approach may be a commonality to the practice of ethics consultation in the US and Japan, while differences emerged in terms of recommendations, surrogate assessment, and assessing treatments. Further research is needed to appreciate differences not only among different nations including, but not limited to, countries in Europe, Asia and the Americas, but also within each country.

Ethics and palliative care consultation in the intensive care unit.

It is clear that ethics and palliative care consultation have, in our view, much to offer intensivists as they attempt to work through the very complex and often tragic cases they face in their daily practice.Potential strengths include clarification of tangled normative issues, facilitation of shared decision making, conflict resolution,and expertise in the provision of comfort care. Despite this, it is an unfortunate fact that many intensivists remain reluctant to use ethics and palliative care services. There are, of course, many possible reasons for this, including the absence of quality services in certain institutions, issues, or power and control, and role misperceptions. It is our hope that we have helped to clarify appropriate roles for ethics and palliative care in the intensive care unit. We urge the continued development of quality ethics and palliative care services, and the use of those services by intensivists.