How brain death declarations can harm, and why legal exemptions should be the rule

The 2022-2023 Bioethics Public Seminar Series will conclude next month with a webinar from Center Assistant Professor Jennifer McCurdy, PhD, BSN, MH, HEC-C, on “How Brain Death Declarations Can Harm, and Why Legal Exemptions Should Be the Rule.” This virtual event is free to attend and open to all individuals.

Wednesday, April 19, 2023
1:30-2:30 PM EDT (UTC−04:00)
Zoom webinar registration: bit.ly/bioethics-mccurdy

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 McCurdy with Spartan helmet graphic in bottom right corner.

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.

Can’t make it? All webinars are recorded and available in our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our email list.

Examining how doctors and patients distinguish between normal and pathological events through the case of epilepsy

The 2022-2023 Bioethics Public Seminar Series continues this month with a webinar from Center Assistant Professor Megh Marathe, PhD, on “Expedient Classification: Diagnosis in Lived Experience and Medical Practice.” This virtual event is free to attend and open to all individuals. This event will be available as a live broadcast only.

Wednesday, March 22, 2023
1:30-2:30 PM EDT (UTC−04:00)
Zoom webinar registration: bit.ly/bioethics-marathe

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 with Spartan helmet graphic

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.

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What do clinicians think about using deep brain stimulation to treat obsessive-compulsive disorder in pediatric patients?

The 2022-2023 Bioethics Public Seminar Series continues next month with a webinar from Center Assistant Professor Michelle T. Pham, PhD, on “Clinician Perspectives on the Potential of DBS for Pediatric Patients with Treatment-Resistant OCD.” This virtual event is free to attend and open to all individuals.

Wednesday, February 15, 2023
1:30-2:30 PM EST (UTC−05:00)
Zoom webinar registration: bit.ly/bioethics-pham

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 Pham with Spartan helmet graphic

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.

Can’t make it? All webinars are recorded and available in our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our email list.

Addressing the complex problems of health care justice generated by precision medicine

The 2022-2023 Bioethics Public Seminar Series begins next month with a webinar from Center Professor Leonard M. Fleck, PhD, on “Precision Medicine and Distributive Justice: Wicked Problems for Democratic Deliberation.” This virtual event is free to attend and open to all individuals.

Wednesday, November 16, 2022
1:30-2:30 PM EST (UTC−05:00)
Zoom webinar registration: bit.ly/bioethics-fleck

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.

Can’t make it? All webinars are recorded and available in our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our email list.

Who “owns” the healthcare data about you?

The 2020-2021 Bioethics Public Seminar Series continues next month on March 24. You are invited to join us virtually to learn about artificial intelligence and healthcare data ownership. Our seminars are free to attend and open to all individuals.

Healthcare Artificial Intelligence Needs Patient Data: Who “Owns” the Data About You?

Adam Alessio photo — Adam M. Alessio, PhD

Event Flyer
Zoom registration: bit.ly/bioethics-alessio

Artificial intelligence (AI) is increasingly used in modern medicine to improve diagnostics, therapy selection, and more. These computer algorithms are developed, trained, and tested with our patient medical data. Certainly beyond the healthcare space, many companies—from Facebook to Amazon to your local pub—are using our consumer data. This is data about you, but is it your data? What rights do you have versus the owners of the data? Does medical data used for the benefit of future patients deserve different treatment than consumer data? This lecture will explore examples of AI and an evolving view of data ownership and stewardship in medicine.

Join us for Dr. Alessio’s online lecture on Wednesday, March 24, 2021 from noon until 1 pm ET.

Adam M. Alessio, PhD, is a professor in the departments of Computational Mathematics, Science, and Engineering (CMSE), Biomedical Engineering (BME), and Radiology. He earned a PhD in Electrical Engineering at the University of Notre Dame and then joined the University of Washington faculty where he was a Professor in the Department of Radiology until 2018. He moved to MSU to be part of the new CMSE and BME departments and the Institute for Quantitative Health Science and Engineering. His research is focused on non-invasive quantification of disease through Artificial Intelligence-inspired algorithms. Dr. Alessio’s research group solves clinically motivated research problems at the intersection of imaging and medical decision-making. He is the author of over 100 publications, holds 6 patents, and has grant funding from the National Institutes of Health and the medical imaging industry to advance non-invasive cardiac, cancer, and pediatric imaging. Dr. Alessio is also the administrative director of the new Bachelor of Science in Data Science at MSU and is looking for partners in the development of a data ethics curriculum at MSU.

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

What do LGBTQ patients want from their healthcare providers?

The 2020-2021 Bioethics Public Seminar Series continues later this month with a panel of MSU alumni. You are invited to join us virtually – events will not take place in person. Our seminars are free to attend and open to all individuals.

Controversies and Complexities in LGBTQ Health Care

Event Flyer
Zoom registration: bit.ly/bioethics-jan27

Do you feel prepared to provide excellent care to your LGBTQ patients? Calls for social justice and corrective actions are being mounted by various and intersectional constituencies. These calls for social change must be reflected in improved clinical care, as well. What do LGBTQ patients want from their healthcare providers? Health professionals often think that they do not serve LGBTQ+ people, but Williams Institute data reports about 3-10% of the U.S. population of adults, depending on state, identify as a sexual and gender minority person. What are some of the ethical and clinical challenges that clinicians and patients face? This seminar will address these broadly understood health issues that impact the LGBTQ community, as we aim toward an inclusive and equitable health delivery system. Bring your questions and take part in this exciting and timely conversation with a panel of MSU alumni.

Join us for this online lecture on Wednesday, January 27, 2021 from noon until 1 pm ET.

Photo of Emily Antoon-Walsh — Dr. Emily Antoon-Walsh

Emily Antoon-Walsh, MD, MA, FAAP (she/her), is a board-certified pediatrician who specializes in the care of hospitalized infants, children and adolescents. She graduated from the Michigan State University College of Human Medicine in 2013 with an MD and an MA from the Bioethics, Humanities and Society program. She completed her pediatric residency at Seattle Children’s Hospital/University of Washington. As a medical student she worked to improve medical education around LGBTQ issues. As a resident she interviewed trans youth and their parents about barriers to gender-affirming care. She now practices hospital pediatric medicine, which presents special challenges and also privileges in providing LGBTQ-affirming care for families. She works in a community hospital in Olympia, WA, where she lives with her wife and child who is a true Pacific Northwest baby and loves the outdoors on the rainiest, cloudiest of days.

Photo of Barry DeCoster — Dr. Barry DeCoster

Barry DeCoster, PhD (he/him), is an Associate Professor of Bioethics and Philosophy at Albany College of Pharmacy and Health Sciences. His research interests focus on the overlapping areas of bioethics and philosophy of science & medicine. DeCoster is interested in how vulnerable patients—such as LGBTQ health, racial minority health, and women’s health—engage and respond to the particular needs of their communities. He is also interested in the lingering impact of the medicalization of LGBTQ health and how queer patients are themselves constructed as both ethical and epistemic agents. Dr. DeCoster received his B.S. in Biotechnology & Humanities from Worcester Polytechnic Institute, and his M.A. and Ph.D. in Philosophy from Michigan State University. He spent much time working at MSU’s Center for Ethics as a grad student, and remembers that time fondly as a source of mentorship. Dr. DeCoster enjoyed the opportunity to teach fantastic students for three years at MSU’s Lyman Briggs College.

Henry Ng, MD, MPH, FAAP, FACP (he/they), is a physician, educator and advocate for LGBTQ health. Dr. Ng has been involved in LGBTQ health care since 2007 and he is currently a physician in the Center for LGBTQ+ Health and the Transgender Surgery and Medicine Program at the Cleveland Clinic Foundation. He completed his BS and his MD at Michigan State University. He completed his residency and chief residency in Internal Medicine/Pediatrics at MetroHealth Medical Center. In 2012, he completed a Master’s in Public Health degree at Case Western Reserve University with an emphasis on Health Promotion/Disease Prevention for LGBT populations. He served as an associate editor for the journal LGBT Health and is a senior associate editor for the journal Annals of LGBTQ Public and Population Health.

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

Does YouTube widen health literacy disparities?

The 2020-2021 Bioethics Public Seminar Series (formerly the Bioethics Brownbag & Webinar Series) continues next month. You are invited to join us virtually – events will not take place in person. Our seminars are free to attend and open to all individuals.

Is Seeking Information on Social Media Harmful to Your Health?

Anjana Susarla photo — Anjana Susarla, PhD

Event Flyer
Zoom registration: bit.ly/bioethics-susarla

Studies of health literacy in the United States, such as the National Assessment of Adult Literacy conducted in 2003, estimated that only 12% of adults had proficient health literacy skills. This talk will examine how social media platforms such as YouTube widen such health literacy disparities by steering users toward questionable content. Extracting thousands of videos purporting to be about diabetes, I verified whether the information shown conforms to valid medical guidelines. Using methods from computer science called deep learning, I identify medical terms in these videos and then classify videos based on whether they encode a high or low degree of medical information. Using data from aggregate engagement with these videos, I discover that videos that are popular are less likely to contain validated medical information. A study on the most popular videos on COVID-19 likewise found that a quarter of videos did not contain medically valid information.

Join us for Dr. Susarla’s online lecture on Wednesday, November 18, 2020 from noon until 1 pm ET.

Anjana Susarla is a Professor of Information Systems at the Eli Broad College of Business. Her work has appeared in several academic journals and peer-reviewed conferences such as Academy of Management Conference, Information Systems Research, International Conference in Information Systems, Journal of Management Information Systems, Management Science and MIS Quarterly. Her op-eds and research have been quoted and published in several media outlets such as the Associated Press, Business Insider, Chicago Tribune, The Conversation, Fast Company, Houston Chronicle, Huffington Post, Michigan Public Radio, Marketplace Morning Report, Nasdaq, National Public Radio, Newsweek, Nieman Lab, the Nikkei, Pew Research, Quartz, Salon, the Week, Wired and the World Economic Forum.

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

How might lack of access impact maternity care options for rural women in Michigan?

The Center for Ethics and Humanities in the Life Sciences is excited to announce the first event of the 2020-2021 Bioethics Public Seminar Series (formerly the Bioethics Brownbag & Webinar Series). You are invited to join us virtually – events will not take place in person. Our seminars are free to attend and open to all individuals.

Maternity Care Deserts in Rural Michigan

Andrea Wendling photo — Andrea Wendling, MD

Event Flyer
Zoom registration: bit.ly/bioethics-wendling

U.S. physician shortages affect rural healthcare access, including access to maternity care. OB deserts, which are geographical high-risk areas for care delivery, exist in the Upper Peninsula and northeast Lower Peninsula of Michigan. How might lack of access impact maternity care options for rural women in our state? Dr. Wendling will present recent work that identified and characterized access points for prenatal and delivery care in Michigan’s rural counties and explored access to Trial of Labor After Cesarean (TOLAC) services for rural Michigan women. We will discuss how lack of access may impact maternity care choices for rural women and will strategize ways to address this issue.

Join us for Dr. Wendling’s online lecture on Wednesday, September 23, 2020 from noon until 1 pm ET.

Andrea Wendling, MD, is a Professor of Family Medicine and Director of the Rural Medicine Curriculum for Michigan State University’s College of Human Medicine. She has received the Rural Professional of the Year Award from the Michigan Center for Rural Health and was named the Outstanding Educator of the Year by the National Rural Health Association in 2020. Dr. Wendling is Assistant Editor for the Family Medicine journal and a founding Associate Editor of Peer-Reviewed Reports in Medical Education and Research (PRIMER). She participates on rural workforce research groups for the National Rural Health Association (NRHA) and Association of American Medical Colleges (AAMC) and has presented and published in the areas of medical education and the rural health workforce. Dr. Wendling is a family physician in rural Northern Michigan.

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

How do our loved ones make life-and-death medical decisions for us?

Speaking for the Dying: Life-and-Death Decisions in Intensive Care

Susan P Shapiro photo — Susan P. Shapiro, PhD

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Seven in ten older Americans who require medical decisions in the final days of life lack capacity to make them. For many of us, our biggest life-and-death decisions—literally—will therefore be made by someone else. But how will they decide for us? Despite their critical role in choreographing the end of another’s life, we know remarkably little. Susan Shapiro’s new book, Speaking for the Dying, fills that void. Drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital, Shapiro will share how loved ones actually speak for the dying, the criteria they use in medical decisions on behalf of patients without capacity, and the limited role of advance directives in this process.

Join us for Dr. Shapiro’s lecture on Wednesday, November 13, 2019 from noon until 1 pm in person or online.

Susan P. Shapiro is a sociologist and research professor at the American Bar Foundation. She works at the intersection of law and relationships of trust in which one acts of behalf of a vulnerable other—for example, medical decision making for patients without capacity. Her publications examine the role of law at life’s end, ethics, agency theory, conflict of interest, the professions, securities fraud and regulation, and white-collar crime. In addition to scores of articles, she is the author of Speaking for the Dying: Life-and-Death Decisions in Intensive Care (U of Chicago Press), Tangled Loyalties: Conflict of Interest in Legal Practice (U of Michigan Press) and Wayward Capitalists: Target of the Securities and Exchange Commission (Yale U Press).

In person: This lecture will take place in C102 Patenge Room in East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

Exploring life with a spinal cord injury

Spinal Cord Injury: Everything You Wanted to Know But Were Afraid to Ask

Mark Van Linden photo — Mark Van Linden, MSA

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Look at him zip around in that wheelchair. He is so independent and inspirational. But I wonder how he goes to the bathroom, if he’s really as happy as he seems, does he have sex, how does that work, is he in pain, does he work? What are the health problems he has to deal with, what are medical expenses? There are many dimensions to a happy and healthy life, and everyone would agree that life is complicated. But when multiplied by a spinal cord injury (SCI), the complexity of life can be off the charts—what we used to take for granted becomes a monumental challenge. This talk will explore life with SCI from a first-person perspective.

Join us for Mark Van Linden’s lecture on Wednesday, October 16, 2019 from noon until 1 pm in person or online.

Mark Van Linden grew up in Lansing, MI and had a very stable and nurturing childhood. Raised by his Dad, Mark attended a private high school, played basketball in college, graduated with a BS in manufacturing, and started out in his career as a manufacturing engineer in the automotive industry. His career was going very well; seemingly right on schedule he met a girl, got married, started a family, and the American Dream was well on its way to reality. Then in 2009, it was discovered that he had an aortic aneurysm, and the required surgery would replace his entire aorta from the arch to the femoral artery. During that surgery, at age 39 with two kids ages 2 and 4, he became paralyzed from the waist down. Everything he knew was now turned upside-down, and a new life was about to begin.

In person: This lecture will take place in C102 Patenge Room in East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? All webinars are recorded! Visit our archive of recorded lectures. To receive reminders before each webinar, please subscribe to our mailing list.

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Healthcare Artificial Intelligence Needs Patient Data: Who “Owns” the Data About You?

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Controversies and Complexities in LGBTQ Health Care

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Is Seeking Information on Social Media Harmful to Your Health?

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Maternity Care Deserts in Rural Michigan

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