Finely crafted distinctions and the art of clinical ethics

Making finely crafted distinctions and deploying them in intellectually rigorous and clinically applicable judgments define, to a considerable degree, the art of clinical ethics. The papers in this "Clinical Ethics" number of the Journal of Medicine and Philosophy demonstrate the art of clinical ethics in their consideration of respect for autonomy vs. respect for persons, the role of risk in triggering assessment of decisional capacity vs. the role of risk in the concept and assessment of decisional capacity, intention vs. foresight in the clinical management of ectopic pregnancy, preserving life vs. relieving suffering in physician-assisted suicide, and what is essential vs. non-essential in defining the "core areas" of ethics education for members of hospital ethics committees.     

How to Rethink the Fourteen‐Day Rule

Recently, attention has been drawn to the basic principles governing the use of human embryos in research: specifically, the so‐called fourteen‐day rule. This rule stipulates that human embryos should not be allowed to grow in vitro past fourteen days of development. For years, the fourteen‐day limit was largely theoretical, since culture techniques were not sufficient to maintain embryos up to this point. Yet in the past year, research has suggested that growing embryos beyond fourteen days might be feasible and scientifically valuable. At the same time, work with pluripotent stem cells, including human PSCs, has shown that under certain conditions, they can form structures that recapitulate developmental features of the postimplantation embryo. This raises the possibility that PSCs could generate embryo‐like structures in vitro, even “synthetic embryos,” that might provoke moral concern but would not fall under most current embryo research policies. In countries that permit embryo research, the fourteen‐day rule has long been the linchpin of an effective policy compromise between what remain deeply divided moral positions on the human embryo's status. It has also, particularly in the United Kingdom, been influential in establishing a bioethics public‐policy process. Any moves to change the rule must consider not just the implications for the use of embryos but also the potential impact of this model of bioethical governance of science.     

Respecting what we destroy. Reflections on human embryo research

The thought that human embryos could command moral respect yet also be acceptably used in medical research has struck some as incoherent. Given some assumptions about why they deserve respect, however, the thought is not objectionable, indeed not even unusual.     

Decisions and Authority

This issue of the Hastings Center Report (January‐February 2017) features three articles exploring aspects of decision‐making for others. In the first two, the focus is on the limits of surrogate decision‐makers’ authority when the surrogates’ judgments about a patient's treatment conflict with the physicians’. If a physician decides that a patient will not benefit from CPR, for example, but the patient's surrogate insists on it, is the physician obliged to proceed with the procedure? Or can the physician, pointing to a duty to provide good care to the patient and not to cause the patient to suffer, get a do‐not‐resuscitate order for the patient—even in the face of the surrogate's objections? These are the questions that animate the first article, in which a group of authors report on a policy implemented at Massachusetts General Hospital to help doctors who face this dilemma. The second article, by physician Jeffrey Berger, flips the questions. If a physician decides that a patient's intractable suffering requires palliative sedation, may the surrogate prevent it anyway? Or can the physician, pointing to a duty to alleviate the suffering, administer palliative sedation even in the face of the surrogate's objections? Such circumstances, says Berger, show the need for conceptual work delineating the limits of surrogates’ authority and practical work on mechanisms for doing so—protecting patients and giving physicians a clear route to follow.      

A new stoic: the wise patient

It is common to talk of wise physicians, but not so common to talk of wise patients. "Patient" isa word derived from the Latin patior--"to suffer," but also "to let be." Suffering has been the universal lot of humanity, and medicine rightly tries to relieve suffering. Medical progress, like all technological progress, leads us more and more to hope that we can control our fate. However, we do well to ask whether our attempts to control our fate are wise. Wisdom played a major role in the philosophy of the ancient Stoics, and so I propose putting these questions into the context of a new stoicism. For the Stoic, happiness consists in living in accord with nature. Stoics are sometimes portrayed as apathetic fatalists, silently accepting whatever misfortune might come their way, but this is a misunderstanding. The Stoic sage, like the common person, wants to preserve life and health. The difference is that the sage's wisdom brings knowledge about what actions are appropriate in the face of suffering. The sage sees suffering not as something that demands immediate control, but as something that might reasonably direct actions. Suffering brings turmoil to the common patient, who will take any possible steps to end the suffering. The wise patient possesses the knowledge that enables a correct assessment of the options in the face of the reality that we ultimately do not control our own fate.     

Medically Assisted Dying and Suicide: How Are They Different,and How Are They Similar?

The practice of medically assisted dying has long been contentious, and the question of what to call it has become increasingly contentious as well. Particularly among U.S. proponents of legalizing the practice, there has been a growing push away from calling it “physician-assisted suicide,” with assertions that medically assisted dying is fundamentally different from suicide. Digging deeper into this claim about difference leads to an examination of the difference between two kinds of suffering—suffering from physical conditions and suffering from psychological conditions—and therefore leads also toward an examination of whether requests for medical assistance in dying by those suffering from psychological conditions and those suffering from physical conditions should be painted with the same brush. In this article, I aim both to illuminate some of the considerations that ought to be included in discussions related to medically assisted dying and to shed light on what the indirect effects of such discussions can be. I consider some of the reasons commonly given for holding that suicide and medically assisted dying differ fundamentally and then whether the conclusion that medically assisted dying should not be called “suicide” follows from the premises. I ask what else might justify the conclusion that the two acts ought to be called by different names, and I examine possible justifications for accepting this premise, as well as what justifications might exist for emphasizing how the acts are alike. Finally, I argue that we should be cautious before concluding that medically assisted dying should not be called “suicide.” We need more evidence either that the two acts are fundamentally different or that emphasizing differences between them is not likely to do more harm than good.     

Surplus embryos,nonreproductive cloning,and the intend/foresee distinction

There is, as some public figures have asserted, a real moral difference between creating embryos expressly for medical research and conducting research on embryos that are left over from infertility treatments. To create an embryo intending all along to destroy it is worse. But in the end, it isn't so much worse that we should ban all nonreproductive cloning.     

The embryo in relationships: a French debate on stem cell research

While many European countries are entering unknown legal terrain where the embryo in vitro is concerned, France can already look back on a long tradition of public discussion and legal codification of ways of dealing with in vitro embryos. In its comprehensive law of 1994, France had still rejected embryo research; however, due to the promising perspectives of stem cell research, the new law now pending implies a clear liberalization of the 1994 provisions. Both the French lawmakers and the National Ethics Commission have repeatedly argued that possible utilization of embryos for research purposes may seem legitimate from the moment that there is no more "parental project." De facto, this concept implies that an embryo can be transformed into an object from the moment that the parents cease to desire it and that the value of protection is solely dependent on the will of third persons. At the same time, France is still speaking of guaranteeing respect for the "dignity of the embryo," which would mean that an embryo must not be reduced to a thing and treated for purposes which are not his own. Therefore, the French solution is not a consistent and honest solution, and in its new legal provisions, France has involved herself in manifold contradictions. France has rejected the conception of pre-embryo, but is de facto following Britain's model without making it explicit.     

Resolving Disputes over Frozen Embryos

The relation between respect for family and reproductive choice and use of IVF technology is in dispute in recent legal cases on the disposition of frozen embryos. Couples in IVF programs should be encouraged to stipulate in advance binding instructions regarding the disposition of such embryos.     

Consenting futures: professional views on social, clinical and ethical aspects of information feedback to embryo donors in human embryonic stem cell research

This paper reports from an ongoing multidisciplinary, ethnographic study that is exploring the views, values and practices (the ethical frameworks) drawn on by professional staff in assisted conception units and stem cell laboratories in relation to embryo donation for research purposes, particularly human embryonic stem cell (hESC) research, in the UK. We focus here on the connection between possible incidental findings and the circumstances in which embryos are donated for hESC research, and report some of the uncertainties and dilemmas of our staff participants. We explore the views of our study participants in relation to two themes: (1) rights to information and anticipating how donors might be informed about future research findings and (2) occupational work goals and trust.     

Researchers and firing squads: questions concerning the use of frozen human embryos

Is it morally acceptable to use human embryos left over from fertility treatments in research that would harm or destroy them? Many answer "no" to this question on the grounds that all human beings, including human embryos, have a basic moral status that forbids such use. There are some, though, who accept this claim about the basic moral status of human embryos but who believe nevertheless that frozen human embryos which were generated for fertility treatments but which are no longer wanted for that project are a morally acceptable source of human embryonic stem cells and are acceptable subjects of other forms of research that would destroy them in course. The reasoning offered in defense of this position typically employs the claim that since these embryos are going to be discarded anyway, their possibly fruitful use by researchers is a preferable alternative and one that is not inconsistent with their basic moral status. Howard Curzer has offered a well-developed argument of this sort, defending the use of these embryos in the ways mentioned while at the same time allowing for their equal basic moral status. This article challenges Curzer's case and offers reasons to reject the moral acceptability of using even these to-be-discarded embryos as research material.     

The suffering stranger: medical anthropology and international morality

Addressing global inequities has come to define a domain of activist medical anthropology called social justice studies. In a recent flagship volume, Dying for Growth: Global Inequality and the Health of the Poor, contributors describe the effect of global economic trends and neoliberal policies on the destitute and disadvantaged. In their advocacy, they use the voices and stories of the poor to explain the impact of structural adjustments. This paper uses Dying for Growth as an example through which to comment on the wider scholarly trend of using the local to validate global claims. The term "suffering stranger" describes those iconic figures whose experiences are presented in truncated first-hand accounts of suffering in order to validate broader theoretical aims. I argue that the suffering stranger masks the real absence of the voices of the poor and their suffering on the world stage. There is no international public sphere within which these voices might be heard; rather, there is a set of claims about justice and human rights. These claims, however, are themselves rooted in cultural values and are inextricably woven into global capital. I argue that, in using the voices of suffering to further a theoretical agenda, social justice activists assume the existence of a public, international domain within which those voices might be heard and that, in so doing, they further integrate the poor into destructive economic systems. Alongside the work of documenting health inequities, a truly effective activism may require assessing and critiquing existing claims of international morality.     

The Utility of Basic Animal Research

For animal research that causes sentient nonhuman animal suffering to be justifiable, I believe that two conditions must be met. First, harming animals for human benefit must be morally justified; this is the speciesism justification. Second, animal research must have utility—that is, it must produce useful, empirically valid knowledge that successfully increases our understanding of human illness and treatments and that could not reasonably be obtained through other means; this is the utility justification. In other words, (some) animals must be sufficiently different from humans in morally relevant ways to allow the morality of speciesism, and (some) animals must be sufficiently similar to humans biologically for cross‐species extrapolation to have utility. Both conditions are necessary, and neither by itself is sufficient to justify animal experimentation. I focus exclusively on the utility justification. I do not defend the morality of using animals in experiments, nor do I review the alternatives and refinements that can minimize laboratory animal suffering. I will argue that I and the medical scientists with whom I work have a sound rationale to continue the work we do.     

Persuasion as respect for persons: an alternative view of autonomy and of the limits of discourse

The article calls for a departure from the common concept of autonomy in two significant ways: it argues for the supremacy of semantic understanding over procedure, and claims that clinicians are morally obliged to make a strong effort to persuade patients to accept medical advice. We interpret the value of autonomy as derived from the right persons have to respect, as agents who can argue, persuade and be persuaded in matters of utmost personal significance such as decisions about medical care. Hence, autonomy should and could be respected only after such an attempt has been made. Understanding suffering to a significant degree is a prerequisite to sincere efforts of persuasion. It is claimed that a modified and pragmatic form of discourse is the necessary framework for understanding suffering and for compassionately interacting with the frail.     

The theologic ethics of euthanasia

The implications of a system of theological ethics are explored in relation to passive euthanasia, "double effect euthanasia," and active euthanasia. A religio-moral ethos anchored in beliefs of radical ethical freedom; the sacred origin and destiny of the human soul; persistent sin; and the drama of suffering, death, and transfiguration as a paradigm for difficult choices condones passive euthanasia and counsels the compassionate offer of relief from pain, even with the "double-edged intention" that the analgesia might end the patient's life. Active euthanasia must be proscribed in principle, but the technological advances that have postponed death also create the need for greater physician participation in offering a point of release in the barricade against death that we have erected.     

Embryo Disposition Disputes: Controversies and Case Law

When prospective parents use in vitro fertilization, many of them hope to generate more embryos than they intend to implant immediately. The technology often requires multiple attempts to reach a successful pregnancy, and couples can cryopreserve any excess embryos so that they have them on hand for later attempts. As part of obtaining informed consent for IVF or cryopreservation, clinics typically ask patients to specify their preferences for the embryos in the event of divorce or death, offering options such as use of the embryos by a specified partner, donation to research, or discarding the remaining embryos. Still, many courts face a recurring problem: the partners dissolve their relationship (typically through divorce), and one party wants to use the frozen embryos over the objections of the other. Courts and legislatures have struggled with how to handle these cases, which seem to pit one partner's right to procreate against the other's right not to procreate. In this essay, we use one of the most recent decisions in this line of cases—the Appellate Court of Illinois's decision in Szafranski v. Dunston—to explain the current state of the law and make recommendations for changes. The issue is ripe for revisiting because in the last year, embryo disputes have become a battlefront for larger conflagrations over the moral status of embryos.     

Reproductive technology: in Britain, the debate after the Warnock Report

Gillon contributes an article on Great Britain to the Hastings Center Report series on reproductive technologies outside the United States. In 1984 the Warnock Committee's report represented the first attempt by a national government to formulate a policy on reproductive issues such as artificial insemination, in vitro fertilization, surrogate mothers, and research on human embryos. Reaction to the Warnock report has focused on its recommendations to ban commercial surrogacy and to allow experimentation on embryos up to 14 days after fertilization. Legislation on surrogacy was passed in 1985, while bills banning embryo research failed in 1986. A 1986 government consultation paper called for discussion of other aspects of the Warnock report, including its recommendation that a statutory licensing authority to regulate reproductive technologies be established. Gillon predicts that no new legislation will be enacted under the present government.     

Dying Well? A Colloquy on Euthanasia and Assisted Suicide

With this special issue the Report once again joins the debate on what patients, physicians, and society can -- and cannot -- live with at the end of life. The articles gathered here address in various ways, from various perspectives, the questions that inform the debate on euthanasia and assisted suicide. Do the canons of self-determination and respect for persons compel us to honor the choices of those who request active assistance in dying? Can we coherently argue that physicians' professional obligations to alleviate suffering extend so far as to taking life on request? To what extent ought our policy decisions rest on consideration of possible consequences?     

The ethics of embryonic stem cell research

In this article I rebut conservative objections to five phases of embryonic stem cell research. I argue that researchers using existing embryonic stem cell lines are not complicit in the past destruction of embryos because beneficiaries of immoral acts are not necessary morally tainted. Second, such researchers do not encourage the destruction of additional embryos because fertility clinics presently destroy more spare embryos than researchers need. Third, actually harvesting stem cells from slated-to-be-discarded embryos is not wrong. The embryos are not sacrificed for the good of others because they would have been destroyed anyway. Fourth, harvesting stem cells from embryos that are not doomed is morally acceptable, because preserving frozen embryos is futile therapy. Finally, creating embryos solely for the sake of harvesting stem cells from them is morally acceptable because the assumption that embryos have the right to life has very counterintuitive implications.     

"Properly disposed of": a history of embryo disposal and the changing claims on fetal remains

This paper explores recent controversies concerning the disposal of embryonic and fetal remains in order to ask how such remains came to be classified as "medical waste." Based on archival research into the social history of human embryo collecting in Baltimore, Maryland, in the early 20th century, I argue that the classification of embryos and fetal remains as medical waste can be traced to a pragmatic alliance between embryologists and state functionaries. Embryologists relied on the state to assist them in acquiring thousands of human embryo remains for scientific study, while state authorities relied on embryologists to provide authoritative knowledge that could be used to facilitate state control over nascent citizens. This alliance contributed to the development of an "embryological worldview," in which human embryos were cast as objective biological "specimens" of use only to embryologists. This exclusive view of the social value of embryos and fetal tissue is now being challenged as other constituencies claim jurisdiction over the remains in order to advance diverse social agendas.