All four of the articles in this issue concern thorny ethical questions around how we should care for and study highly vulnerable patients whose well-being is already deeply compromised: addicts and their families; gravely ill people considering death as an option; elderly people who have suffered loss of function; and premature infants. All four reveal how standard bioethical questions such as how to protect patient autonomy and how to decide on a proper course of care become much harder to tease out and answer when we are confronting these vulnerabilities.
Audrey Chapman and colleagues' paper, "Ethical Guidelines for Genetic Research on Alcohol Addiction and Its Applications," is our lead article this issue, and it is especially timely given the reemergence of a national conversation about addiction. Chapman and her coauthors examine the ethical issues surrounding genetic research on alcohol addiction. This is a multiply complicated topic: Genetic research already raises difficult and uncharted ethical questions concerning privacy, deterministic explanations and the underlying metaphysical assumptions that govern this research, poor scientific literacy on the part of general public, and the impact of genetic knowledge on family and community members. Meanwhile, 'lifestyle' illnesses such as alcoholism raise important issues concerning the role of agency and the will, the relationship between individual and structural pressures and explanations, shame-based messaging, and more. When we combine these two sets of issues we end up in murky and multifaceted ethical territory indeed. Chapman and colleagues take on this complexity. They argue that our scientific understanding of the role of genetics in addiction is nascent and unclear at best, and that such research comes with distinctive risks in terms of its impacts on people's self-understandings. They also look at the difficult question of how and when to involve children of addicts, who form a multiply and dramatically vulnerable group, in research. They urge that genetic research on addiction must not come at the expense of investments in social, behavioral, and psychological research. [End Page ix]
In "Support for Voluntary Euthanasia with No Logical Slippery Slope to Non-Voluntary Euthanasia," Steven Daskal argues that one can assess the moral case for voluntary euthanasia independent from the case for non-voluntary euthanasia. Importantly, Daskal's focus is on reasons for medically enabling someone to die, and so he is not especially concerned with the distinction between physician-assisted suicide and physicianadministered euthanasia. In response to theorists who have argued that there is a slippery slope from support for voluntary euthanasia to support for non-voluntary euthanasia, Daskal argues that rather than trying to block the slippery slope, we should rather understand these as two qualitatively distinct moral topics. In particular, he pushes back against the idea that support for a request for voluntary euthanasia requires a judgment that someone is better off dead. He claims that there are autonomy-preserving and well-being-enhancing reasons that may support a request for voluntary euthanasia that do not rely on such a judgment. In contrast, it seems the only patient-regarding argument that could be made for non-voluntary euthanasia is that the patient is worse off if allowed to stay alive.
Josephine Najem and her colleagues take on the painful and sensitive topic of ageism and implicit bias in care for the elderly in "Assessing Rehabilitation Eligibility of Older Patients: An Ethical Analysis of the Impact of Bias." Najem et al. argue that absent concrete guidelines developed specifically for the needs and constraints of older patients, our judgments about who is a good candidate for rehabilitation care are likely to be biased. This is both because ageism will make us reluctant to allocate limited resources to the elderly, and because our understanding of what the goals and outcomes of rehabilitation should be, who can participate in a rehabilitation program, and what sort of timetable is appropriate are all based on the model of a young adult striving for full independence. In the case of older patients, recovery goals may be different, recovery time may be slower, and the ability to participate in therapy may be partial. Measured by standards designed for younger people, older patients will thus be judged candidates for rehabilitation disproportionately less often. But this is not necessarily because they are less deserving or because the benefits of rehabilitation care wouldn't be worthwhile.
Finally, Austin Horn and his colleagues offer a close examination of the ethics of the Surfactant, Positive pressure, and Pulse Oximetry Randomized Trial (SUPPORT)—a trial in which premature babies received either unlimited oxygen, which was the standard of care but which seemed to [End Page x] be associated with retinopathy, or a fixed lower dose of oxygen. Although the controlled-dose trial arm had a lower rate of retinopathy, it also had significantly more deaths. In the wake of the trial, many complained that the informed consent process for parents had been inadequate. This trial has turned out to be remarkably and visibly contentious. Letters signed by dozens of prominent bioethicists were published in top medical journals, taking opposite views of the ethical acceptability of the trial (Macklin et al. 2013; and Wilfond et al. 2013), and no consensus has since emerged.
The issue, at its core, is that the trial is not a traditional controlled study under carefully streamlined conditions; instead, the point was to study the interventions in the context of regular care. Horn et al. argue that the basic ethical question at stake is whether a trial such as this should be conceived as fundamentally research or practice. If it is practice, then it does not require regular ethics review or the kind of stringent process for opting in that we require for research participants, especially when the research involves a vulnerable population such as premature infants. But according to Horn and colleagues, the SUPPORT trial is not best conceived as practice. This is so in virtue of the fact that the patients were randomized into trial arms, and because the oxygen dosing could not be adjusted and reassessed in response to how a particular patient was responding. This meant that physicians were doubly unable to exercise clinical judgment or to be dynamically involved in patient care; they take such judgment and involvement to lie at the heart of clinical practice. Thus, the authors conclude, more stringent ethical standards were appropriate. This article is important because the trial itself was so contentious that it called for this sort of detailed and deep ethical analysis. But furthermore, it points our attention to a larger epistemological issue: What counts as high-quality evidence? Is controlled, 'purified' evidence always the scientifically soundest, or do we sometimes specifically wish to discover how an intervention works in practice? And if the latter, how can we rethink our norms research ethics to adapt them to contexts that are messy by design?