Lynn A. Jansen

Two concepts of therapeutic optimism

Researchers and ethicists have long been concerned about the expectations for direct medical benefit expressed by participants in early phase clinical trials. Early work on the issue considered the possibility that participants misunderstand the purpose of clinical research or that they are misinformed about the prospects for medical benefit from these trials. Recently, however, attention has turned to the possibility that research participants are simply expressing optimism or hope about their participation in these trials. The ethical significance of this therapeutic optimism remains unclear. This paper argues that there are two distinct phenomena that can be associated with the term ‘therapeutic optimism’—one is ethically benign and the other is potentially worrisome. Distinguishing these two phenomena is crucial for understanding the nature and ethical significance of therapeutic optimism. The failure to draw a distinction between these phenomena also helps to explain why different writers on the topic often speak past one another.

The Ethics of Altruism in Clinical Research

If people sometimes participate in research because of altruism—because they want to help in the search for treatments—should we revise our views about what kinds of experiments are ethical? If participants act out of altruism, we might let them accept greater risks than we would if they are motivated only by a desire for personal gain. But how can we know when participants are genuinely altruistic?

Child Organ Donation, Family Autonomy, and Intimate Attachments

What standard or principle should guide decisionmaking concerning the permissibility of allowing children to be organ donors? For a long time, it has been widely assumed that the best interest of the child is the appropriate standard. But recently, several critics have charged that this standard fails to give due weight to the interests of the family and the intimate relationships that the family makes possible. 1,2 This article reviews and rejects both the best-interest standard (as it has been traditionally conceived) and the alternative standard recommended by the critics. I then propose a new standard to help parents, healthcare professionals, and judges decide when it is and is not permissible for children to serve as organ donors. This new standard modifies and broadens the best-interest standard to allow it to account adequately for the contribution that intimate relationships make to the well-being of children.

Intractable End-of-Life Suffering and the Ethics of Palliative Sedation: A Commentary on Cassell and Rich

In their succinct commentary on end-of-life suffering and palliative sedation, Cassell and Rich claim that “the validity and defensibility of the distinction between types of end-of-life suffering and the range of clinical interventions that may be provided to address them warrants a more extensive articulation and analysis than its proponents have thus far offered.” Perhaps so, in our article1 on the topic, Daniel Sulmasy and I tried to provide some of the needed articulation and analysis, but we did not claim that our article represented the last word on the subject. Rather, we sought to provide an ethical justification for distinguishing types of suffering at the end-of-life and for taking this distinction seriously when considering the practice of palliative sedation. Cassell and Rich mention our article but do not engage directly with its arguments. We defended a number of key claims, three of which can be briefly reviewed here. First, there are clinically and ethically significant differences between types of suffering, including end-of-life suffering. At a minimum, it is necessary to distinguish neurocognitive from agent-narrative suffering.2 The former is directly causally related to the patients underlying physiological condition. Like all suffering, it does not exist in a mental vacuum, but its character is not dependent on the …

The Virtues in their Place: Virtue Ethics in Medicine

We are currently in the midst of a revival of interest in thevirtues. A number of contemporary moral philosophers havedefended a virtue-based approach to ethics. But does thisrenewal of interest in the virtues have much to contributeto medical ethics and medical practice? This paper criticallydiscusses this question. It considers and rejects a number ofimportant arguments that purport to establish the significanceof the virtues for medical practice. Against these arguments,the paper seeks to show that while the virtues have a genuinerole to play in medical ethics, it is a limited role, one thatis subordinate to the role that other moral concepts such asrules and principles play.

Mindsets, Informed Consent, and Research

Study after study shows that subjects regularly overestimate the likelihood of gaining therapeutic benefit from a clinical trial. But more study is needed on why that mistake is common, and what it says about informed consent. Subjects may think about research differently at different phases in their participation.

Paternalism and fairness in clinical research.

In this paper, we defend the ethics of clinical research against the charge of paternalism. We do so not by denying that the ethics of clinical research is paternalistic, but rather by defending the legitimacy of paternalism in this context. Our aim is not to defend any particular set of paternalistic restrictions, but rather to make a general case for the permissibility of paternalistic restrictions in this context. Specifically, we argue that there is no basic liberty-right to participate in clinical research and that considerations of distributive fairness justify some paternalistic protections of research subjects.

Dispositional optimism and therapeutic expectations in early-phase oncology trials

Prior research has identified unrealistic optimism as a bias that might impair informed consent among patient‐subjects in early‐phase oncology trials. However, optimism is not a unitary construct; it also can be defined as a general disposition, or what is called dispositional optimism. The authors assessed whether dispositional optimism would be related to high expectations for personal therapeutic benefit reported by patient‐subjects in these trials but not to the therapeutic misconception. The authors also assessed how dispositional optimism related to unrealistic optimism.

Ascribing intentions in clinical decision-making

Background: The intentions of clinicians are widely considered to be relevant to the ethical assessment of their actions. A better understanding of the psychological factors that influence the ascription of intentions in clinical practice is important for improving the self-understanding of clinical decision-making and, ultimately, the ethics of clinical care. Drawing on empirical research on intentionality that has been done in other contexts, this is the first study to test whether the “asymmetric effect” of intention ascription is exhibited by respondents when presented with clinical decision-making scenarios. Objective: To assess how individuals attribute intentions to clinical actors in clinical decision-making scenarios. Methods: A total of 149 first and second year medical students was randomly assigned to two groups (group A, group B). Subjects in each group read two scenarios and submitted anonymous responses to questions regarding each scenario. Results: The asymmetric effect was strongly exhibited by the responses given to scenario 2, but it was not exhibited by the responses given to scenario 1. Conclusion: The present study provided evidence for the view that people’s ascription of intentions to others is influenced by their previous evaluative judgement of the conduct in question.

HIV exceptionalism, CD4+ cell testing, and conscientious subversion

In recent years, many states in the United States have passed legislation requiring laboratories to report the names of patients with low CD4 cell counts to their state Departments of Health. This name reporting is an integral part of the growing number of “HIV Reporting and Partner Notification Laws” which have emerged in response to recently revised guidelines suggested by the National Centers for Disease Control (CDC). Name reporting for patients with low CD4 cell counts allows for a more accurate tracking of the natural history of HIV disease. However, given that this test is now considered to be an “indicator” of HIV, should it be subject to the same strict consent required for HIV testing? While the CDC has recommended that each state develop its own consent requirements for CD4 cell testing, most states have continued to rely on the presumed consent standards for CD4 cell testing that were in place before the passage of name reporting statutes. This allows physicians who treat patients who refuse HIV testing to order a CD4 cell blood analysis to gather information that is indicative of their patient’s HIV status. This paper examines the ethical and legal issues associated with the practice of “conscientious subversion” as it arises when clinicians use CD4 cell counts as a surrogate for HIV testing.