- Schwartz PH, Sachs G. Rethinking Decision Quality: Measurement, Meaning, and Bioethics. Hastings Center Report. 2022.
- Schwartz PH. The Framing Dilemma: Quantitative Information, Shared Decision Making, and Nudging. Medical Decision Making. 2022.
- Schwartz PH. Silence About Screening. American Journal of Bioethics. 2007.
- Tucker Edmonds B, Hoffman SM, Laitano T, McKenzie F, Panoch J, Litwiller A, DiCorcia MJ. Evaluating Shared Decisions-Making in Postpartum Contraceptive Counseling Using Objective Structured Clinical Examinations. Womens Health Rep (New Rochelle). 2022.
- Bode LM, Jager SM, Panoch J, Hoffman SM, Laitano T, Kavanaugh K, Tucker Edmonds B. Mode of delivery in the context of periviable birth: Informed deference and shared decision-making. J Perinatol. 2023.
- Rager JB, Schmidt KK, Schwartz PH. Discordant Care and Decision Quality: Patients’ Reasons for Not Receiving Their Initial Test of Choice in Colorectal Cancer Screening. Medical Decision Making. 2024;44(6):705-714. doi:10.1177/0272989X241262278
Decision Aides
IUCB investigators research the design and implementation of decision aides that support healthcare professionals and patients in making informed, evidence based decisions about treatment options and care plans.- Schwartz PH, O’Doherty KC, Bentley C, Schmidt KK, Burgess MM. Layperson Views About the Design and Evaluation of Decision Aids about Colorectal Cancer Screening: A Public Deliberation. Medical Decision Making. 2021.
- Schwartz PH, Imperiale TF, Perkins SM, Schmidt KK, Althouse S, Rawl SM. Impact of Including Quantitative Information in a Decision Aid for Colorectal Cancer Screening: A Randomized Controlled Trial. Patient Education and Counseling. 2019.
- Schwartz PH, O’Doherty KC, Bentley C, Schmidt KK, Burgess MM. Layperson Views about the Design and Evaluation of Decision Aids about Colorectal Cancer Screening: A Public Deliberation. Medical Decision Making. July 2021.
- Schwartz PH, Perkins SM, Schmidt KK, Muriello PF, Althouse S, Rawl SM. Providing Quantitative Information and a Nudge to Undergo Stool Testing in a Colorectal Cancer Screening Decision Aid. Med Decision Making. 2017.
- Schwartz PH. Questioning the quantitative imperative: Decision aids, prevention, and the ethics of disclosure. Hastings Center Report 2011; 41(2): 30-39. doi: 10.1353/hcr.2011.0029
Pharmacogenomics
Since the inception of the IU Center for Bioethics, our faculty have studied and addressed ethical issues related to genetics and other areas of precision health.- Doyle TA, Schmidt KK, Halverson CME, Olivera J, Garcia A, Shugg TA, Skaar TC, Schwartz PH. Patient Understanding of Pharmacogenomic Test Results in Clinical Care. Patient Education and Counseling. 2023.
- Halverson CME, Pratt VM, Skaar TC, Schwartz PH. Ending the Pharmacogenomic Gag Rule: The Imperative to Report All Results. Pharmacogenomics. 2021.
- Kasperbauer TJ, Schwartz PH. Genetic Data Aren’t So Special: Causes and Implications of Re-identification. Hastings Center Report. 2020.
- Doyle TA, Schmidt KK, Halverson CME, Olivera J, Garcia A, Shugg TA, Skaar TC, Schwartz PH. Patient understanding of pharmacogenomic test results in clinical care. Patient Educ Couns. 2023.
Data Ethics
Our faculty research involves the responsible and ethical management, use, and sharing of data in biomedical research and healthcare to ensure privacy, fairness, and integrity.- Kasperbauer TJ, Halverson CME, Garcia A, Schwartz PH. Biobank Participants’ Attitudes Toward Data Sharing and Privacy: The Role of Trust in Reducing Perceived Risks. Journal of Empirical Research on Human Research Ethics. 2022.
- Kasperbauer TJ, Halverson C, Garcia Sierra A, Schmidt KK, Schwartz, PH. Biobank Participants’ Attitudes Toward Requiring Understanding for Biobank Consent. Ethics & Human Research. 2022.
- Kasperbauer TJ, Schmidt KK, Thomas A, Perkins SM, Schwartz PH. Incorporating Biobank Consent into a Healthcare Setting: Challenges for Patient Understanding. AJOB Empirical Bioethics. 2021.
- Meslin EM, Alpert SA, Carroll AE, Odell JD, Tierney, WM, Schwartz PH. Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers. International Journal of Medical Informatics 2013; 82: 1136-1143. doi: 10.1016/j.ijmedinf.2013.08.010
- Tierney WM, Alpert SA, Byrket A, Caine K, Leventhal JC, Meslin EM, Schwartz PH. Provider responses to patients controlling access to their electronic health records: a prospective cohort study in primary care. Journal of General Internal Medicine 2015; 30 (Suppl 1): S31–7. doi: 10.1007/s11606-014-3053-0
- Schwartz PH, Caine K, Alpert SA, Meslin EM, Carroll AE, Tierney WM. Patient preferences to control access to their electronic health records in a prospective cohort study in primary care. Journal of General Internal Medicine 2015; 30 (Suppl 1): S25-30. doi: 10.1007/s11606-014-3054-z
- Meslin EM, Schwartz PH. How bioethics principles can aid design of electronic health records to accommodate patient granular control. Journal of General Internal Medicine 2015; 30 (Suppl 1): S3-6. doi:10.1007/s11606-014-3062-z.
Informed Consent
Our faculty study the processes by which patients are provided with comprehensive information about a medical procedure or research participation, enabling them to voluntarily decide whether to proceed.- Kasperbauer TJ, Waltz A, Hawryluk B, Moore C, Schmidt KK, Schwartz PH. Collecting Biospecimens and Obtaining Biobank Consent from Patients in a Healthcare Setting: Practical and Ethical Considerations. Academic Medicine. 2022.
- Hartsock JA, Schwartz PH, Waltz AC, Ott MA. Anticipatory Waivers of Consent for Pediatric Biobanking. Ethics Hum Res. 2019.
Patient Communication
IUCB investigators research patient communication strategies and patient understanding of healthcare communication.- Schwartz PH, Edenberg E, Barrett PR, Perkins SM, Meslin EM, Imperiale TF. Patient Understanding of Benefits, Risks, and Alternatives to Screening Colonoscopy. Family Medicine. 2013.
- Schwartz PH. Comparative risk: Good or bad heuristic? American Journal of Bioethics. 2016.
- Schwartz PH. Do the numbers help patients decide? Ethical and empirical challenges for evaluating the impact of quantitative information. In Numerical Reasoning in Judgments and Decision Making about Health, eds. B.L. Anderson and J. Schulkin, Cambridge: Cambridge Univ. Press. 2014. pp. 252-280.
- Schwartz PH. Disclosure and rationality: Comparative risk information and decision-making about prevention. Theoretical Medicine and Bioethics 2009; 30(3): 199-213. doi:10.1007/s11017-009-9111-7.
- Schwartz PH, Meslin EM. The ethics of information: Absolute risk reduction and patient understanding of screening. Journal of General Internal Medicine 2008; 23(6): 867-870. doi: 10.1007/s11606-008-0616-y
Disability
Faculty investigators study the impacts of disability and methodologies to improve outcomes for disabled people.- Halverson CME, Doyle TA. Patients' strategies for numeric pain assessment: a qualitative interview study of individuals with hypermobile Ehlers-Danlos Syndrome.Disabil Rehabil.
- Doyle TA, Conboy E, Halverson CME. Diagnostic deserts: Community-level barriers to appropriate genetics services.American Journal of Medical Genetics.
- Halverson CME, Penwell HL, Francomano CA. Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes. Social Science & Medicine: Qualitative Research in Health. 2023.
- Halverson CME, Clayton EW, Garcia Sierra A, Francomano C. Patients with Ehlers-Danlos Syndrome on the Diagnostic Odyssey: Rethinking Complexity and Difficulty as a Hero's Journey. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 2021.
Race and Medicine
IUCB faculty study the social determinants of health, strategies for reducing health disparity, and the impacts of strucural issues in heathcare.- Bolakale-Rufai IK, Knapp SM, Johnson AE, Brewer L, Mohammed S, Addison D, Mazimba S, Tucker-Edmonds B, Breathett K. Association Between Race, Cardiology Care, and the Receipt of Guideline-Directed Medical Therapy in Peripartum Cardiomyopathy. J Racial Ethn Health Disparities. 2023.
- Mohamed KA, Ghabril M, Desai A, Orman E, Patidar KR, Holden J, Rawl S, Chalasani N, Kubal CS, D Nephew L. Neighborhood poverty is associated with failure to be waitlisted and death during liver transplantation evaluation. Liver Transpl. 2022.
- Nephew LD, Gupta D, Carter A, Desai AP, Ghabril M, Patidar KR, Orman E, Dziarski A, Chalasani N. Social determinants of health impact mortality from HCC and cholangiocarcinoma: a population-based cohort study. Hepatol Commun. 2023.
- Nephew LD, Knapp SM, Mohamed KA, Ghabril M, Orman E, Patidar KR, Chalasani N, Desai AP. Trends in Racial and Ethnic Disparities in the Receipt of Lifesaving Procedures for Hospitalized Patients With Decompensated Cirrhosis in the US, 2009-2018. JAMA Netw Open. 2023.
Bioethics and the Law
Faculty investigators discuss the intersection of legislation, policy, regulatory developments and bioethics.- Katz, Robert, The Re-Gift of Life: Can Charity Law Prevent For-Profit Firms from Exploiting Donated Tissue and Nonprofit Tissue Banks?. DePaul Law Review, Vol. 55, No. 3, pp. 943-1015, 2006
- Schwartz PH, Hartsock JA. Selling Clinical Biospecimens: Guidance for Researchers and Private Industry. J Law Med Ethics. 2023;51(2):429-436.
- Hartsock JA. Provider Conscientious Refusal, Medical Malpractice, and the Right to Civil Recourse. Am J Bioeth. 2018;18(7):66-68.
IUCB Faculty investigate the roles of religion and spirituality in medicine.
- Craig, David. “Mission Integrity Matters: Balancing Catholic Health Care Values and Public Mandates.” Book chapter in Law, Religion, and Health in America, edited by Elizabeth Sepper and Holly Fernandez Lynch (Cambridge University Press, 2017) 125-38.
- Craig, David. Health Care as a Social Good: Religious Values and American Democracy. Washington, DC: Georgetown University Press. 2014.
Miscellaneous
Additional publications of interest by our faculty.- Waltz A, Johnson B, Schwartz PH. Clarifying and limiting responsibilities: Guidelines for investigators and the IRB on return of clinically relevant research results to participants. Ethics & Human Research (In press). Accepted May 2023.
- Schwartz PH, Hartsock JA. Selling clinical biospecimens: Guidance for researchers and private industry. Journal of Law, Medicine, and Ethics (in press). Accepted April 2022.
- Rager JB, Schwartz PH, Defending opioid treatment agreements: Disclosure, not promises. Hastings Center Report 2017; 47(3): 24-33. doi:10.1002/hast.702
- Schwartz PH. Broadening and balancing the goals of medicine: Battling disease and treating the healthy. Naturalism in philosophy of health, ed. E. Giroux. Springer. 2016. pp. 199-208.
- Schwartz PH. Defending the distinction between treatment and enhancement. American Journal of Bioethics 2005; 5 (3): 17-19. doi: 10.1080/15265160591002755
- Halverson CME, Donnelly CE, Weiner M, Lee JL. Content Analysis of Emoji and Emoticon Use in Clinical Texting Systems. JAMA Network Open. 2023.
- Hartsock JA. The White Coat Cape: An Ethical Analysis of Emerging Therapies to Treat Spinal Muscular Atrophy.Seminars in Pediatric Neurology.
- David M. Craig, Ivan Douglas Hicks, Andrew Green, Maria Meschi, Pamela Napier, Stephanie Patterson, George Armstrong, Fiona Schicho, Matthew Wilcox. Health Equity, Urban Congregations, and HIP. Public Report. Oct 2019.
- Brown BP. Why Wellness Fails. J Am Coll Radiol. 2021 Jan;18(1 Pt B):166-169.
- Comer AR. Fettig L, Bartlet S, L D'Cruz, Umythachuk, Nina. Physician Self-Reported Use of Empathy in Clinical Practice. Clinical Ethics. 2022.
- Comer AR. The Evolving Ethics of Anatomy: Dissecting an Unethical Past in Order to Prepare for a Future of Ethical Anatomical Practice. The Anatomical Record. 2022.
- Jones, Marta, Waltz, Amy. “Full Board Review.” Institutional Review Board: Management and Function, Third Edition. Ed. Public Responsibility in Medicine & Research (PRIM&R) et al. Jones & Bartlett Learning, 2021.
- Doyle, T.A., Halverson, C.M.E. (2022). Use of Complementary and Alternative Medicine by Patients with Hypermobile Ehlers-Danlos Syndrome: A Qualitative Study, Front. Med. 9:1056438. doi: 10.3389/fmed.2022.1056438
- Wagner W, Doyle T, Francomano C, Knight D, Halverson C. Patient Interest in the Development of a Center for Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder in the Chicagoland Region. Preprint. Res Sq. 2023;rs.3.rs-3034682. Published 2023 Jul 14.
- Halley MC, Halverson CME, Tabor HK, Goldenberg AJ. (2023). Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care. Am J Bioethic,