2022-2023 Bioethics Public Seminar Series

Metastatic cancer and costly precision medicines generate extremely complex problems of health care justice. Targeted cancer therapies yield only very marginal gains in life expectancy for most patients at very great cost, thereby threatening the just allocation of limited health care resources. Philosophic theories of justice cannot address adequately the “wicked” ethical problems associated with these targeted therapies. Following Rawls, Fleck argues for a political conception of health care justice, and a fair and inclusive process of democratic deliberation governed by public reason. The virtue of democratic deliberation is that citizens can fashion autonomously and publicly shared understandings to fairly address the complex problems of health care justice generated by precision medicine. “Wicked” problems can metastasize if rationing decisions are made invisibly. A fair and inclusive process of democratic deliberation can make these “wicked” problems visible, and subject, to fair public reason constraints. What constrained choices do you believe you would endorse with your fellow citizens as being “just enough”?

Leonard M. Fleck, PhD, is a professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University. Dr. Fleck's interests focus on medical ethics, health care policy, priority-setting and rationing, and reproductive decision-making. He explores the role of community dialogue (rational democratic deliberation) in addressing controversial issues of ethics and public policy related to emerging genetic technologies. More recently, he has completed a book-length manuscript that addresses a number of ethical and policy issues related to precision medicine, primarily in a cancer treatment context. He also completed another book that addresses several contemporary issues related to bioethics and religion from a Rawlsian public reason perspective.

The World Society for Stereotactic and Functional Neurosurgery has argued that at least two successful randomized controlled trials should be available before deep brain stimulation (DBS) treatment for a psychiatric disorder is considered “established.” DBS is currently offered to children ages 7 and older with refractory dystonia under an FDA-humanitarian device exemption. No randomized control trials were conducted – practitioners relied on evidence from DBS use in adults. In addition, accumulated research supports the safety and effectiveness of DBS for obsessive-compulsive disorder (OCD) in adults (Wu et al. 2021). Approximately 10-20% of children with OCD have treatment-resistant presentations, so it is likely that there will be interest in offering DBS for some children (POTS 2004). Both ethical and empirical anticipatory work is needed to evaluate whether, and if so, under what conditions it might be appropriate to offer DBS in this context. This seminar will present qualitative data from semi-structured interviews with 24 clinicians with expertise in this area regarding: (a) acceptable levels of evidence to offer DBS in this patient population and (b) institutional policies or protocols needed to effectively provide care for them.

Michelle T. Pham is an assistant professor in the Center for Bioethics and Social Justice and the Department of Medicine in the Michigan State University College of Human Medicine. She conducts research in the interdisciplinary field of Neuroethics and connected issues in the Philosophy of Science. Some recent topics include promoting post-trial care for patient-participants in experimental brain implant studies and decision-making in the context of pediatric deep brain stimulation. Pham also researches ways to promote engagement with patient-participants who contribute to neuroscience and neurotechnology research; and she has raised the concern that patient-participants in these brain implant studies may be exploited.

This talk examines how doctors and patients distinguish between normal and pathological events through the case of epilepsy. Epilepsy is a chronic illness and disability characterized by recurrent and unpredictable seizures. Seizures are transient events during which people lose control over parts of body-mind function. The talk shows that the diagnostic boundary between seizure and non-seizure events is fluid, dynamic, and porous in lived experience and medical practice. Calling an event a seizure has consequences well beyond treatment, also affecting a patient’s financial stability, social participation, and life aspirations. Hence, doctors and patients take an expedient approach to classifying seizures, informally modifying the very definition of seizure to postpone or avoid severe consequences. Doing so enables doctors and patients to bend rigid classification schemes to suit the complex realities of people's lives. This work advances scholarship on classification and expertise in information studies, science and technology studies, and disability studies.

Megh Marathe is an assistant professor in the Center for Bioethics and Social Justice in the College of Human Medicine and the Department of Media and Information in the College of Communication Arts and Sciences at Michigan State University. Marathe’s research seeks to foster inclusion in expert practices and technologies by centering the perspectives of marginalized people. They do this by studying the experiences and practices of multiple stakeholders – doctors and patients, citizens and civic officials – that is, laypeople and professionals, people who are marginalized as well as those in powerful positions, to generate critical theory and practical interventions for inclusive practice and technology design. Marathe adopts an ethnographic approach that is inflected by their computer science training and software industry experience.

According to U.S. law and The Uniform Determination of Death Act (UDDA), an individual can be declared dead by either cardiac or neurological criteria. The latter, known colloquially as brain death, allows a physician to withdraw patients from medical devices against the wishes of families and other surrogates. While once seemingly settled, the concept of death by neurological criteria has increasingly become a topic of controversy, both technically and philosophically. This seminar will argue that the UDDA should make New Jersey-style legal exemptions to brain death declaration a national guideline, thus allowing individuals to claim a religious exemption when they disagree that brain death is, in fact, death. Why? Because the concept of brain death is based on a specific eurochristian worldview that is not held in common by many reasonable people in U.S. society. The imposition of those unshared worldviews on patients and their loved ones through force of law causes unjustified and avoidable trauma, furthers epistemic injustices, and generates distrust.

Jennifer L. McCurdy is an assistant professor in the Center for Bioethics and Social Justice within the Michigan State University College of Human Medicine. She is a clinical and social bioethicist and educator whose work focuses on understanding and eliminating racial and colonial injustices in contemporary health settings and communities. She currently engages medical students at MSU in curricula related to social context and ethics issues in healthcare. Her current research focuses on brain death policy, Black birthing family safety, and Indigenous representation in bioethics.