The past decade has witnessed escalating legal and ethical challenges to the diagnosis of death by neurologic criteria. The legal tactic of demanding consent for the apnea test, if successful, can halt the DNC. However, US law is currently unsettled and inconsistent in this matter. Consent has been required in several trial cases in Montana and Kansas but not in Virginia and Nevada. In this paper, we analyze and evaluate the legal and ethical bases for requiring consent before apnea testing (...) and defend such a requirement by appealing to ethical and legal principles of informed consent and battery and the right to refuse medical treatment. We conclude by considering and rebutting two major objections to a consent requirement for apnea testing: a justice-based objection to allocate scarce resources fairly and a social utility objection that halting the diagnosis of brain death will reduce the number of organ donors. (shrink)

Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...) secondary and other research findings is often limited by reference to terms and concepts like “incidental,” “analytic validity,” “clinical validity,” “clinical relevance,” “clinical utility,” “clinical significance,” “actionability,” and “desirability.” These terms are used in different ways by different writers to describe obligations in different sorts of cases. -/- Underneath this definitional confusion is a general notion, supported by much of the literature, that findings only need to be disclosed when they surpass certain presumably objective or measureable thresholds, such as medical importance or scientific reproducibility. The problem is that there is significant variability in the way that these terms and concepts are used in the literature and, as such, in defining the scope of an obligation to return findings that surpasses the relevant thresholds. -/- The goal of this paper is to analyze the definitional muddle underlying the debate about returning genetic research findings, with the hope of answering a few questions. First, what is the range of definitions being used in this debate? Based on an extensive literature review, Part 1 will lay out a range of articulated definitions for each relevant term, with the goal of categorizing them into a handful of distinct types. Part 2 explains the definitional redundancy and confusion in the current literature, and, drawing from the terminological patterns identified in Part 1, outlines more cohesive building blocks to inform the development of future disclosure frameworks.Our minimum goal in articulating these conceptual building blocks is to promote clearer articulations of, and distinctions between, future disclosure frameworks. More ambitiously, we suggest which definitions and conceptualizations we consider most appropriate to use in future disclosure frameworks. Here, we seek to balance benefits to participants through the disclosure of important information with the minimization of undue burdens on individual researchers and the research enterprise more generally. -/- Our analysis builds upon the central philosophical distinction between concepts and conceptions. The basic idea is that the “concept” of X refers to the general (and relatively uncontroversial) structure/shape of X, while various “conceptions” of X are more particular, filled out, and controversial elaborations of the concept. In other words, “concepts” of X will be formal representations of X, while “conceptions” of X will be substantive interpretations of the key elements and relationships operating within that formal framework. (Implicit in this distinction is an important point about the nature of disagreement – namely, that in order for two or more parties to “disagree” about X as opposed to simply talk past one another, there must be at least enough shared agreement about X to know that the parties are referring to the same thing. A concept of X provides this point of common agreement, while competing conceptions of X mark the areas where disagreement arises.) In this paper, we will employ this distinction in a fundamental way to clarify exactly where the primary disagreements arise in the debate over disclosing genetic research findings. -/- We propose that, underlying all the seeming confusion and disagreement, there are three central and widely agreed upon concepts at work in this debate—validity, value, and volition. The first two concepts concern the nature of the information itself. An obligation to disclose only exists when findings are valid and have value but there are competing conceptions of how to determine or define validity and valuableness. The third concept—volition—pertains not to the information but rather to the person to whom it will be disclosed. Does that person want or not want the information, and what is the best way of determining this? Here, too, competing conceptions arise. Our key point, though, is that almost all of the ethical disagreement arises because of competing conceptions of these three concepts. Understanding and appreciating this key point can help to refocus the substantive debate by providing some common ground to start from in determining how best to interpret these shared concepts. This refocusing can, ideally, produce more productive debate and facilitate some progress in resolving it. (shrink)

Bioethicists invoke a duty to rescue in a wide range of cases. Indeed, arguably, there exists an entire medical paradigm whereby vast numbers of medical encounters are treated as rescue cases. The intuitive power of the rescue paradigm is considerable, but much of this power stems from the problematic way that rescue cases are conceptualized—namely, as random, unanticipated, unavoidable, interpersonal events for which context is irrelevant and beneficence is the paramount value. In this article, I critique the basic assumptions of (...) the rescue paradigm, reframe the ethical landscape in which rescue obligations are understood, and defend the necessity and value of a wider social and institutional view. Along the way, I move back and forth between ethical theory and a concrete case where the duty to rescue has been problematically applied: the purported duty to regularly return incidental findings and individual research results in genomic and genetic research. (shrink)

In most children’s hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians (...) about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children’s hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are ethics committee meetings, Nursing Ethics Forum, ethics Brown Bag workshops, PICU ethics rounds, Grand Rounds, NICU Comprehensive Care Rounds, Palliative Care Team case conferences, multidisciplinary consults in Fetal Health Center, and ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of “core competencies” than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple “moral spaces” in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today. (shrink)

A balanced, accessible discussion of whether and on what grounds animal research can be ethically justified.

abstract It is generally assumed that the link between utilitarianism and vegetarianism is relatively straightforward. However, a familiar objection to utility‐based vegetarianism maintains that, given the massive scale of animal agribusiness, any given person is causally impotent in reducing the overall number of animals raised for food and, thus, in reducing the unfathomably high quantity of disutility engendered thereby. Utilitarians have frequently responded to this objection in two ways: first, by appealing to expected utility and economic thresholds, and, secondly, by (...) appealing to publicity effects. In this paper, I will offer some reasons for thinking that, however far these responses go in the direction of ethical vegetarianism, both leave an important normative gap between the dietary prescription they are capable of underwriting and a ‘minimally‐genuine’ vegetarian obligation. What is needed to close this gap is a utility‐based reason that (1) generates an ethical prescription for minimally‐genuine vegetarianism and (2) circumvents the causal impotence objection. As I see it, there is a straightforward and auspicious reason that can perform both of the required tasks — namely, an appeal to the well‐documented welfare‐reducing effects of eating animal products upon human health. For, if causal impotence is to work as a global objection to utility‐based vegetarianism (rather than as a more local objection to certain reasons supporting that position), then it must operate as a general thesis about the incapacity for any given individual to bring about more utility solely through her own abstention from consuming animal products. However, for almost any given individual, the decision to maintain a vegetarian diet is causally potent in at least diminishing the expected disutility for herself of poorer health and a shorter life span associated with the consumption of animal products. Thus, it follows that (1) there are plausible, if not conclusive, utilitarian grounds for minimally‐genuine vegetarianism and (2) the causal impotence objection fails as a general criticism of utility‐based vegetarianism. (shrink)

Decision-making capacity (DMC) is, in many ways, a central organizing concept of modern health care ethics. Patients with DMC have the moral—if not always the legal—authority to make all manner of...

Prospective parents have long been interested in knowing as much information about their children as early as possible. This interest is not—and never has been—strictly limited to significant “medi...

Many bioethicists view the primary task of bioethics as ‘value clarification’. In this article, I argue that the field must embrace two more ambitious agendas that go beyond mere clarification. The first agenda, critique, involves unmasking, interrogating, and challenging the presuppositions that underlie bioethical discourse. These largely unarticulated premises establish the boundaries within which problems can be conceptualized and solutions can be imagined. The function of critique, then, is not merely to clarify these premises but to challenge them and the (...) boundaries they define. The second agenda, integration, involves honoring and unifying what is right in competing values. Integration is the morally ideal response to value conflict, offering the potential for transcending win/lose outcomes. The function of integration, then, is to envision actions or policies that not only resolve conflicts, but that do so by jointly realizing many genuine values in deep and compelling ways. My argument proceeds in stages. After critically examining the role and dominant status of value clarification in bioethical discourse, I describe the nature and value of the two agendas, identify concrete examples of where each has been and could be successful, and explain why a critical integrative bioethics – one that appreciates the joint necessity and symbiotic potential of the two agendas – is crucial to the future of the field. The ultimate goal of all of this is to offer a more compelling vision for how bioethics might conduct itself within the larger intellectual and social world it seeks to understand and serve. (shrink)

The emergence and development of the field of clinical ethics coincided with the revitalization of moral philosophy following the publication of John Rawls’ ma...

In 1970, President Richard Nixon expressed his unambiguous support for interracial marriage; as for same-sex marriage, he exclaimed, "I can't go that far—that's the year 2000" . Nixon's prescient remark, made shortly after the Supreme Court's 1967 decision in Loving v. Virginia to overturn anti-miscegenation laws, expresses at once hesitancy for, yet resigned acceptance of, the inevitable expansion of civil marriage to include more and more kinds of loving partnerships. Nearly forty years later, Nixon's uncanny prediction appears close to being (...) realized. At the very least, many have gone where he claimed to be unable to go, adding their voices to a growing movement seeking state recognition of same-sex unions as a matter of equality, rights, and justice. And, indeed, a strong case might be made on such grounds, were the state justified in sponsoring an institution of civil marriage in the first place. (shrink)

Volume 20, Issue 7, July 2020, Page 92-94.

The pandemic creates unprecedented challenges to society and to health care systems around the world. Like all crises, these provide a unique opportunity to rethink the fundamental limiting assumptions and institutional inertia of our established systems. These inertial assumptions have obscured deeply rooted problems in health care and deflected attempts to address them. As hospitals begin to welcome all patients back, they should resist the temptation to go back to business as usual. Instead, they should retain the more deliberative, explicit, (...) and transparent ways of thinking that have informed the development of crisis standards of care. The key lesson to be learned from those exercises in rational deliberation is that justice must be the ethical foundation of all standards of care. Justice demands that hospitals take a safety‐net approach to providing services that prioritizes the most vulnerable segments of society, continue to expand telemedicine in ways that improve access without exacerbating disparities, invest in community‐based care, and fully staff hospitals and clinics on nights and weekends. (shrink)

The question of whether a liberal state ought to recognize same-sex marriage must be situated within a broader inquiry into the proper relationship between political liberalism and marriage simpliciter. This general inquiry invites a diverse set of responses to the narrower question.A first widely held view—call it thick marital egalitarianism—sees a straightforward link from central liberal values, such as neutrality, equality, and nondiscrimination, to the full and equal inclusion of all willing partnerships into the thickly constituted, state-defined institution of marriage. (...) A second very different account—call it thin marital egalitarianism—sees the liberal commitment to neutrality as requiring a minimal legal framework of support for caring relationships sans additional antecedent restrictions, such as those thickly defining their nature or their purpose . Finally, a third important view—call it liberal marital contractualism—holds that this kind of "minimal marriage" is not minimal enough; a liberal state ought to treat marriage as a primarily "private affair worked out between or among partners, with [its] involvement limited to the enforcement of general laws and particular contracts that are individually designed within a defensible system of contract law". (shrink)

Newborn screening (NBS) began in the 1960s by testing all newborns for a single condition—phenylketonuria, or PKU—which, when identified and treated early, significantly reduces morbidity. Over the...

In this issue of the Hastings Center Report, Amulya Mandava, Joseph Millum, and Benjamin E. Berkman revisit an old conundrum—whether to disclose incidental findings of misattributed parentage—in light of new developments in genomic sequencing that will make that conundrum both more complex and more common. While the authors’ defense of nondisclosure as the appropriate default action in genomic research aligns with prior thinking and practice, their exploration of philosophical foundations is refreshingly rigorous and developed. The final product of their analysis—an (...) applied taxonomy of the types of harms and benefits that can result from disclosure of misattributed parentage—is an important contribution to the literature on this subject and worthy of serious consideration by genomic researchers and bioethicists alike. Despite these virtues, I am struck by the authors’ deference to the traditional assumption that disclosure ethics can be adequately understood and appreciated within a purely consequentialist framework. (shrink)

In this issue of the Report, Daniel Groll suggests new ways to understand old tensions between autonomy and paternalism. He categorizes disagreements between doctors and patients in four ways. Some are about the ends or goals of medical treatment. For these, he claims, patient choices are based upon patient values, and physicians should neither challenge nor assess them. More common are disagreements about the appropriate means to achieve an agreed-upon goal. These subdivide into two distinct categories—those in which the relative (...) efficacy of possible means is “medically assessable” and those in which it is not. When disagreements are medically assessable, Groll argues, doctors can legitimately challenge patient .. (shrink)

Volume 20, Issue 6, June 2020, Page W1-W5.

Tim Wardle’s 2018 documentary film Three Identical Strangers is an exploration of identity, family, and loss. It’s also about nature versus nurture and the boundaries of ethically permissible research, particularly research involving children. The film tells the story of identical triplets who were separated soon after birth in 1961. A different family adopted each boy, without being told that their son had two identical brothers. The adoption agency responsible for finding the families was collaborating with a group of researchers working (...) on a study about … something. Three Identical Strangers details the boys’ fight to obtain information about the study and for closure. But while the film may have received rave reviews, it left us feeling uneasy. We came away with two sets of questions, one having to do with the story that the film documents and the second with the ethics of filmmaking itself. (shrink)

Bioethical decision‐making in pediatrics diverges from similar decisions in other medical domains because the young child is not an autonomous decision‐maker, while the teen is developing—and should be encouraged to develop—autonomy and decisional capacity. Thus the balance between autonomy and beneficence is fundamentally different in pediatrics than in adult medicine. While ethical dilemmas that reflect these fundamental issues are common, many pediatric physician and nursing training programs do not delve into the issues or offer specific training about how to deal (...) with borderline cases.To meet this need, the Children's Mercy Bioethics Center in Kansas City, Missouri, created a program specifically dedicated to serving practicing, experienced pediatric health professionals. Our students come from various professional disciplines: they are doctors, nurses, social workers, chaplains, lawyers, psychologists, counselors, and hospital administrators practicing in pediatrics. (shrink)