We're launching a quarterly newsletter! Each issue will highlight recent faculty achievements, our ongoing work in bioethics, and our upcoming events.
IUCB Secures NIH Funding for Three Research Projects
Enhancing Biobank Trustworthiness: Designing and Testing a Transparency Initiative (2025-26, $158,131): In this bioethics supplement to the Indiana CTSI, Dr. Schwartz and Dr. Doyle will develop a web tool for Indiana biobanks to explain to donors how their data and samples are being used in research, building upon their past work on public deliberation in Indiana.Understanding Access Barriers to Diagnostic Technologies in Underserved Communities (2025-26, $158,500). In this bioethics supplement to the Indiana Collaborative for Undiagnosed Rare Disease (NINDS), Dr. Doyle will study healthcare access barriers for Hoosiers with rare and undiagnosed diseases.
Artificial Intelligence-based & Ethically-focused Multi-Modal Data Integration Framework for Screening, Diagnosing, and Caring for Chronic Kidney Disease (CKD) Patients (PIs Sarder, Eadon, Pahira) (2025-27, $4,090,889). Dr. Schwartz and Dr. Doyle will lead the ethics component of a project to improve prediction of chronic kidney disease (CKD) progression with Artificial Intelligence. They will meet with CKD patients, conduct online studies to identify ethical issues, and provide guidance for developing and using this novel AI tool.
IUCB Appoints Two New Affiliate Faculty Members
FillerThe IUCB welcomes Dr. Jason Organ, PhD, FAAA, and Joe Kotva, PhD as affiliate faculty members.
Joe Kotva brings extensive background in theological ethics and biomedical ethics to the center. He is an Assistant Professor of Medicine at IUSM-South Bend whose research focuses on the intersection of religious thought and contemporary bioethical issues, with particular attention to virtue ethics and narrative medicine.
Jason Organ joins the center with expertise in anatomy, evolutionary biology, and the ethics of anatomical education. He is an Professor of Anatomy, Cell Biology, and Physiology at IUSM. His bioethics work addresses ethical questions surrounding body donation programs, the use of human remains in teaching and research, and the historical and contemporary treatment of anatomical subjects.
Joe Kotva brings extensive background in theological ethics and biomedical ethics to the center. He is an Assistant Professor of Medicine at IUSM-South Bend whose research focuses on the intersection of religious thought and contemporary bioethical issues, with particular attention to virtue ethics and narrative medicine.
Jason Organ joins the center with expertise in anatomy, evolutionary biology, and the ethics of anatomical education. He is an Professor of Anatomy, Cell Biology, and Physiology at IUSM. His bioethics work addresses ethical questions surrounding body donation programs, the use of human remains in teaching and research, and the historical and contemporary treatment of anatomical subjects.
IU School of Medicine Blog Showcases IUCB Research and Education
In August, the IU School of Medicine profiled the IUCB and our faculty in a blog titled, "IU Center for Bioethics tackles complex issues of humanity surrounding emergent medical technologies. ” Laura Gates' piece features research and teaching by IUCB faculty, including Dr. Halverson’s research on care for patients with rare diseases and teaching responsible conduct of research, Dr. Nephew’s efforts to increase access to liver transplantation, and Dr. Schwartz’s study of patient decision making. Ms. Gates examines a range of ethical questions, from issues raised by access and price of blockbuster new diabetes and weight loss drugs and by AI’s emergence in healthcare and research. Gates also highlights how IUCB teaching and discussion reaches a wide audience at the University and beyond, including medical students, graduate students, and high school students.
Explore the full article and additional blogs from our faculty and staff here.
Notable Publications from Our Faculty
The Effect of Personalized Risk Messages on Uptake of Colorectal Cancer Screening : A Randomized Controlled Trial - Schwartz PH, et al., Annals of Internal Medicine
This randomized controlled trial tested whether providing personalized risk information about advanced colorectal neoplasia to patients and their providers would increase colorectal cancer screening uptake compared to generic messaging. While personalized risk messages showed no overall effect on screening rates, they increased stool-based testing in one health system, suggesting that the effectiveness of personalized risk communication may depend on institutional context.
What Are Ethical Merits and Drawbacks of Viewing "Medical Mysteries" as Human Subjects Research? - Doyle T, Conboy E., AMA Journal of Ethics
This article examines the tension in Undiagnosed Diseases Network research where participants enroll hoping for diagnostic answers that will improve their care, but may receive scientifically valid findings that offer no treatment options or personal benefit, leaving them questioning whether their participation was worthwhile. Drs. Conboy and Doyle proposes dynamic consent models and community engagement platforms to help participants better understand that research aims to generate knowledge for future patients rather than guarantee individual therapeutic benefit.
An evaluation of practices and policies used in genetics clinics across the United States to manage referrals for Ehlers-Danlos and hypermobility syndromes - Boucher L, Nestler B, Groepper D, Quillin J, Deyle D, Halverson CME. Genetics in Medicine Open
Due to a lack of nationally recognized referral guidelines for Joint Hypermobility Syndrome and Hypermobile Ehlers-Danlos Syndrome, health care institutions develop their own policies. The ad-hoc development of the development of these policies may create inconsistent access, barriers to diagnosis and treatment as well as missed diagnosis. This article maps these policies systematically and highlights the need for national guidelines of care for JHS/HEDS patients
Who Decides? Exploring Decisional Dynamics for Periviable Resuscitation among Diverse Family Structures - Cheng, E, Hoffman S, Schultz V, Castellon-Perez N, Witting H, King C, Tucker-Edmonds B. Journal of Perinatology
In this study, Dr. Brownsyne Tucker Edmonds, Faculty Investigator at the IUCB, and her co-authors studied how families decide whether to resuscitate a prematurely born baby (22-26 weeks of gestation), where extremely invasive steps are needed, survival is uncertain, and the chance of disability is high. Through interviews with 60 parent dyads, the researchers identified four themes, including a focus on the mother making the decision, the importance of involvement of the partner, a focus on who will be taking care of the child, and the need for empathy and support. This investigation furthers an area of research conducted by Dr. Tucker Edmonds and her collaborators on the ethics of this fraught area of medical decision making.
Our Upcoming Events
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