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The Google of Healthcare: Making Big Data Work for—As Opposed to Against—Our Patients’ Best Interest
Our data are collected at every turn: where we drive, who we email, what we google, what we buy. Perhaps a last bastion of expected privacy protections surrounds our health data—but while some systems (like healthcare providers) have stringent governance, others (like wellness apps) do not. Ready access and linkage of medical information can help us provide better care to our patients, but it can also serve to harm, alienate, and erode trust. This talk will explore how health data are currently being collected and by who, as well as ways we can both serve and protect our patients in the future.
Kayte Spector-Bagdady, JD, MBE, is an Assistant Professor in the Department of Obstetrics and Gynecology at the University of Michigan Medical School and the Service Chief of the Research Ethics Service in the Center for Bioethics and Social Sciences in Medicine (CBSSM). She is a former drug and device attorney and Associate Director of President Obama’s Presidential Commission for the study of Bioethical Issues.
Title: Use of Preventive Ethics Rounds to Identify, Anticipate, and Proactively Address Ethical Dilemmas
Presenters: Janice Firn, PhD, LMSW, Katie Feder, M2, Sally Salari, M4
The intersection of complex, critical illness and evolving medical technology in hospital intensive care units (ICUs) drives ethical dilemmas which in turn affect patient care and contribute to moral distress and burnout in providers. Rounding regularly in ICUs allows clinical ethicists to proactively intervene in ethically challenging cases at a time when they are most amenable to intervention. Through case discussion, clinical ethicists can help educate and support critical care providers in thinking through ethical issues pertinent to patient care throughout the hospital course. This approach can be helpful in offering a common language and framework for addressing ethical issues in every day clinical practice. To provide real-time education in the clinical context and early identification of ethical issues, Michigan Medicine initiated novel, system-wide “preventive ethics rounds” in all the ICUs (medical and surgical, adult and pediatric) in the form of a pre-consult rounding service. Providers use ethics related tools to constructively work through difficult cases as they arise; which can improve patient care and ameliorate moral distress. The presenters will address the ways in which preventative ethics rounds have impacted the formal consultation process, the types of ethical issues and patient characteristics discussed during rounds, and if/how these differ from those discussed during formal ethics consultation.
“Reexamining the Right Not to Know Genetic Information”
While promising to eventually revolutionize medical research and practice, the capacity to cheaply and quickly generate an individual's entire genome has not been without controversy. Producing information on this scale seems to violate some of the accepted norms governing how to practice medicine, norms that evolved during the early years of genetic testing when a targeted paradigm dominated. One of these widely accepted norms was that an individual has a right not to know genetic information about him or herself. Prompted by evolving professional practice guidelines, the right not to know has become a highly controversial topic, particularly in the context of research utilizing genomic sequencing. The medical community and bioethicists are actively engaged in a contentious debate about the extent to which individual choice should play a role (if at all) in determining which clinically significant findings are returned. This talk will explore the extent to which it is legally and ethically necessary to respect the so-called right not to know genetic information about oneself. Challenging the majority view that the right not to know is sacrosanct, the speaker will push back against that vigorously held (although not always rigorously defended) position, in defense of the idea that we should abandon the notion of a strong right not to know. Drawing on the fields of law, philosophy and social science, he will provide an extended argument in support of a default for returning high value genetic information without asking about a preference not to know. He will conclude by providing some recommendations about how best to balance individual autonomy and professional beneficence as the field of genomic medicine continues to evolve.
Masahito Jimbo is Professor of Family Medicine and Urology at the University of Michigan. Having worked as a family physician in both urban (Philadelphia) and rural (North Carolina) underserved areas, he has first-hand knowledge and experience of the challenges faced by clinicians and healthcare institutions to be successful in providing patient care that is personal, comprehensive, efficient and timely. Initially trained in basic laboratory research, having obtained his MD and PhD degrees at Keio University in Tokyo, Japan, Dr.
Scott L. Greer, Ph.D.
Professor, Health Management and Policy, Global Public Health, and Political Science
Physician Autonomy in Neonatology from 1979-2016: The Forces of Law, Ethics, Technology, and Families
Charley Willison, University of Michigan
Michael Rozier, St. Louis University
Scott L. Greer, University of Michigan
Joel Howell, University of Michigan
Renee Anspach, University of Michigan
Ann Greer, University of Wisconsin-Milwaukee
Neonatology as a field has pushed the boundary of which lives can be saved, now making it possible for babies to survive even if they are born ten earlier than than Patrick Kennedy, whose treatment in 1963 marked a surge into public consciousness for the field. Neonatologists are therefore positioned on frontiers of both medical advance and legal, ethical, and social debates.
Like other medical specialists, neonatologists face competing pressures. They must balance what can be done for their patients against what should be done for their patients. Evolving technology constantly changes what can be done, which means providers regularly reconsider what should be done. Because the neonatologist’s patient is always silent about her or his wishes, providers must give heed to the interests voiced by other interested parties. First among these are their patients’ caregivers, usually parents. Neonatologists also face pressure from colleagues both within neonatology and in other specialties. Additionally, hospital administration also shapes provider choices, especially related to matters of finance and public relations. Neonatologists must also navigate social forces, especially in law and ethics, that can be particularly challenging in the United States, where any question related to reproduction can quickly become a social controversy far beyond a single practitioner’s control.
Our study attempts to answer the following question: Over the past several decades, how have neonatologists negotiated these complex pressures when making life-and-death decisions? To put it more personally, in a field where providers must often choose between the lesser of many poor options, how do neonatologists arrive at decisions that they can live with? To answer these questions, we draw upon existing scholarship in the history of neonatology9,10 as well as several waves of interviews with physicians that took place over the course of nearly four decades. Our approach is to explore changes that limit the professional autonomy of neonatologists by comparing the findings of interview data collected since 1979 with the better-known technological, organizational, and legal or ethical developments surrounding neonatologists. Neonatologists created a new area of medicine by rescuing children who had previously died, but thereby exposed themselves to pressures from parents to the law.
Dominic A. Sisti, Ph.D.
Director, The Scattergood Program for Applied Ethics of Behavioral Health Care
Assistant Professor, Department of Medical Ethics & Health Policy
Assistant Professor, Department of Psychiatry
Perelman School of Medicine at the University of Pennsylvania
“Therapeutic Privilege in Psychiatry? The Case of Borderline Personality Disorder”
Borderline personality disorder is a serious mental illness that effects 2-3% of the population, is highly stigmatized, and is often comorbid with other mental disorders. Although no pharmaceutical interventions exist, long-term psychotherapy has been shown to alleviate the symptoms of BPD. Nonetheless, behavioral health care professionals often hesitate to discuss this disorder with their patients even when it is clear they have this disorder. Why do psychiatrists, in particular, fall silent? In this talk, I will sketch the history of BPD and describe ethical arguments for and against of therapeutic nondisclosure. I will summarize empirical data regarding psychiatrist nondisclosure of BPD, including recent research conducted by my team at Penn. I will argue that diagnostic nondisclosure, while well-intentioned, can have long-term negative consequences for patients, caregivers, and the health system more generally. As a form of therapeutic privilege, nondisclosure of BPD is ethically inappropriate.
Dominic Sisti, PhD is director of the Scattergood Program for the Applied Ethics of Behavioral Health Care and assistant professor in the Department of Medical Ethics & Health Policy at the University of Pennsylvania. He holds secondary appointments in the Department of Psychiatry, where he directs the ethics curriculum in the residency program, and in the Department of Philosophy. Dominic’s research examines the ethics of mental health care services and policies, including long-term psychiatric care for individuals with serious mental illness and ethical challenges in correctional mental health care. He also studies how mental disorders are defined, categorized, and diagnosed with a focus on personality disorders. Dr. Sisti's writings have appeared in peer-reviewed journals such as JAMA, JAMA Psychiatry, Psychiatric Services, and the Journal of Medical Ethics. His work has been featured in popular media outlets such as the New York Times, NPR, Slate, and The Atlantic. Dr. Sisti received his PhD in Philosophy at Michigan State University. A native of Philadelphia, Dominic received his Master’s degree in bioethics from the University of Pennsylvania and his bachelor’s degree from Villanova University.