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