IUCB Newsletter, January 2025

A message from Peter Schwartz

Hi all: Thanks for your interest and involvement in the IU Center for Bioethics and best wishes for the new year. 2025 was a good year for the IUCB, with a few grants landing for projects that are now underway (see Doyle and Schwartz Receive NIH Funding for Biobank Project,  Doyle to Study Healthcare Access among Hoosiers with Rare and Undiagnosed Disease, and IUCB to Study Ethical Co-Design of Healthcare AI ), many prominent presentations and papers by our amazing faculty, and great teaching and outreach. We had five IU Bioethics Grand Rounds and four TREATs talks in 2025. See below and on our Events page for our upcoming Grand Rounds and TREATs talks for Spring 2026, and please come and participate, in person or online.

One big change with the new year: As of this week, our program manager Nic Oliver has moved to a new job in DC on Capitol Hill (best wishes to him!) and Seamus Dohahue, our grad assistant in Fall 2025, has taken over his role as we search for a permanent replacement. Please reach out to Seamus (seadonah@iu.edu) or me with any questions that we can help with. Thanks again and be in touch. Best, Peter

IUCB Quarter in Review

Robert L. Wolen Lecture in Bioethics 2025

In November, Dr. Leonard Fleck of Michigan State University was the Robert L. Wolen Lecturer in Bioethics, hosted by the Indiana University Center for Bioethics and the Department of Biochemistry, Molecular Biology, and Pharmacology hosted Dr. Fleck presented, “Rough Justice, Wicked Problems: Using AI to Decide Who Gets Extremely Expensive Treatments,” in which he explored the “wicked problem” of deciding whether to use AI to allocate scarce healthcare resources. In particular, he examined how emerging predictive and prognostic capacities of AI could help or hurt our capacity to do just priority-setting in health care and cost control.


A recording of the talk is available to watch on our website.

 

 

2nd Biennial HEALeR Symposium


The HEALeR (Health Excellence Achieved through Learning Health Systems Research) Collaborative at IU Health, directed by IUCB Faculty Investigator Brownsyne Tucker-Edmonds, MD, MPH, MS, held its second biennial symposium on November 6, 2025. Ruth Faden, PhD, MPH , Johns Hopkins University, presented the first plenary address on the promises and challenges for Learning Healthcare Systems for advancing medicine and equity. Dr. Faden then participated in a panel with Dr. Tucker-Edmonds, IUCB affiliate faculty member Amy Waltz, JD, and IUCB Director Peter Schwartz, MD, PhD on associated ethical and regulatory issues associated with learning health systems. The topics related to previous teaching, presentations, and research at the IUCB, including a TREATs talk by Dr. Schwartz.

Some relevant papers by members of the IUCB are available here:

· Collecting Biospecimens and Obtaining Biobank Consent From Patients in an Academic Health Care Setting: Practical and Ethical Considerations

· Incorporating Biobank Consent into a Healthcare Setting: Challenges for Patient Understanding

IUCB Research Highlighted in RARE Revolution Magazine

IUCB post-doctoral fellow Tom Doyle and Faculty Investigator Colin Halverson were recently interviewed by Nicola Miller of Rare Revolution Magazine about their paper, " Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study with Patients and Parents with Rare Undiagnosed Diseases." The study, qualitative interviews with 31 participants, revealed that patients and families use social media as a resource for: information gathering and critical engagement, emotional and social support, local connections and practical support, communication efficiency and privacy, but can also have potential downsides. 

Using these findings, the research team has developed actionable recommendations (such as the creation of a community guide and the compilation of official resources and documents in a shared files section) that it intends to disseminate in order to assist creators and moderators of these communities. For more information, read the complete interview here.

Colin Halverson, PhD
Tom Doyle, PhD

Notable Publications from Our Faculty

Personalizing lung cancer screening recommendations for heterogeneous populations: a microsimulation study - Joshua B. Rager, MD. MA, MS, et al., Journal of the National Cancer Institute

This microsimulation study estimated individualized quality-adjusted life-years saved with lung cancer screening, finding that current lung cancer screening eligibility criteria likely excludes millions of others who could benefit from new eligibility criteria.

Sources and Consequences of Self-Doubt in Patients with Ehlers-Danlos Syndrome: A Qualitative Study in Europe and North America - Colin M E Halverson, Samantha L Vershaw, Tom Doyle, BMJ Open 

Dr. Halverson's team examined how clinicians' scepticism regarding patients' self-reports of subjective symptoms can be internalised, leading to psychosocial and medical harms. They found that EDS patients reported high levels of self-doubt, attributing such doubt to a dismissal and minimization of their symptoms. 

Harnessing Natural Language Processing to Identify Documentation of Serious Illness Communication for Patients with Decompensated Cirrhosis - Lauren Nephew, MD, et al., The American Journal of Gastroenterology 

In this article, the research team aimed to evaluate language processing (NLP) to identify serious illness communication documentation in clinical notes from patients with decompensated cirrhosis, finding that NLP is more efficient and as accurate as manual chart review for identifying SIC documentation in the EHR for patients with DC. 

January 15 • 12-1PM

TREATS: Studying Patient Use of LLMs

Online via Zoom 

March 5 • 12-1PM

Bioethics Grand Rounds: 'Values and Preferences': Examining the Language of Serious Illness and End of Life

In person (room TBD) and online via Zoom

April 13 • 7-9 PM

IU Indianapolis Campus Center and Online via Zoom