Bioethics Research and Scholarship

The Center for the Study of Bioethics is a leader in multidisciplinary scholarship and research. These components of the Center's work provide a crucial foundation for all of our other activities.

In our research and scholarship, we strive to distill the underlying philosophical, legal, and cultural assumptions and implications of bioethical issues and to recommend a process of consensus building.

 Bioethics Research

The Center has pursued a variety of interdisciplinary research and scholarly activities since its humble beginnings in the early 1980s. This commitment to research and publication continues today and will be an on-going part of the Center’s future endeavors.

Program in Genomics and Ethics

Advancing a Healthier Wisconsin continued funding to support the development of a new Program in Genomics and Ethics (PGE) in the Center for Bioethics and Medical Humanities. The goals of this novel program are to (1) Discover new knowledge through the conduct of innovative research on genomics and ethical issues raised by emerging genomic technologies; and (2) Disseminate new knowledge and best practices for addressing the ethical issues raised by new genomic technologies to key stakeholders including health care providers, researchers and the public. Through these goals, the PGE is poised to enhance the health of Wisconsin residents through the ethical translation of genomic technologies to clinical practice.

This year, grant activities continued to focus on infrastructure development, including faculty and staff recruitment, to support the future work of the PGE in subsequent grant years. Additionally, collaborations with multiple other research areas were established including the Human and Molecular Genetics Center, PCOR and the CTSI. These collaborations resulted in 3 NIH grant submissions and the drafting of several IRB submissions for which data collection will take place in 2013. Outreach efforts also resulted in multiple presentations both locally and nationally.


Current Key Research Projects

Easy to Read Informed Consent for HCT Trials
In collaboration with the Center for International Blood and Marrow Transplant Research (CIBMTR) at MCW, and the National Marrow Donor Program (NMDP), Dr. Spellecy is Co-Principle Investigator for a study seeking to evaluate the effectiveness of a novel, easy to read consent form for hematopoietic cell transplantation clinical trials in terms of comprehension as well as research participant satisfaction and anxiety.

Improvement of Communication Process and Outcomes after Newborn Genetic Screening
This is a statewide, 4-year observational study of communication processes and outcomes after newborn screening identifies carrier status for sickle cell or likely carrier status for cystic fibrosis. Dr. Spellecy is serving as an ethics consultant on this federally-funded project.

Stakeholders Experience with Psychiatric Advance Directives
With funding from the National Alliance for Research on Schizophrenia and Depression, Center faculty member Ryan Spellecy, PhD continues his research that examines the attitudes and personal expectations concerning psychiatric advance directives of four key groups of stakeholders: policy-makers, consumers, families, and clinicians. Through interviews, this project aims to identify barriers to the use and implementation of psychiatric advance directives, and evaluate the potential to overcome these barriers.


Previous Research Projects
Previous research conducted by Center faculty has addressed a wide range of bioethics issues with important public policy implications, including:

  • In 1989, we surveyed all Wisconsin physicians who had been sued for malpractice, along with the patients who sued them, in order to evaluate the causes and effects of the litigation experience on the physician-patient relationship and to suggest alternative approaches to the problems of professional negligence. (R. Shapiro, et al. A Survey of Sued and Nonsued Physicians and Suing Patients. Archives of Internal Medicine 1989; 149: 2190-2196.)
  • Using a case-based survey instrument, we researched Wisconsin physicians' attitudes toward euthanasia and the likely impact of its legalization on respondents' practices and physician-patient relationships. (R. Shapiro, et al. Willingness to Perform Active Euthanasia: A Survey of Physician Attitudes. Archives of Internal Medicine 1994; 154: 575-584.)
  • In light of the proliferation and endorsement of ethics committees in health care institutions throughout the country over the past ten to twenty years, we conducted a survey of Wisconsin hospitals regarding the composition and functions of their ethics committees. This survey solicited data from hospitals with an existing ethics committee about the history of these committees, characteristics, and perceived strengths and weaknesses of these committees. (R. Shapiro, et al. Wisconsin Healthcare Ethics Committees. Cambridge Quarterly of Healthcare Ethics 1997; 6: 288-292.)
  • In 1996, Center faculty collaborated on research that studied the effect of state legislation requiring the disclosure of options for the treatment of breast cancer on the use of breast-conserving surgery in clinical practice. (A. Nattinger, et al. The Effect of Legislative Requirements of the Use of Breast-Conserving Surgery. The New England Journal of Medicine 1996; 335: 1035-1040.)
  • In 1998, we began to explore the impact of managed care on the physician-patient relationship from the perspectives of both physicians and patients. Our first survey, directed to Wisconsin physicians, solicited information on the prevalence of managed care arrangements in respondents' practices and the impact of these arrangements on their professional and personal lives and on their relationships with patients. (R. Shapiro, et al. Managed Care: Effects on the Physician-Patient Relationship. Cambridge Quarterly of Healthcare Ethics 2000; 9: 71-81.)
  • In 1999, we conducted a telephone survey with a representative group of Wisconsin health care consumers that solicited data regarding (a) the respondents' experiences with changes in our health care delivery structure, and (b) respondents' perceptions of the impact of these changes on their relationships with their physicians. (R. Shapiro, et al. Managed Care, Doctors, and Patients: Focusing on Relationships, Not Rights. Cambridge Quarterly of Healthcare Ethics, forthcoming Summer 2003.)
 Bioethics Publications

Center faculty are scholars of the process of issue analysis and conflict resolution. Selected key faculty publications include:

2012

Derse AR. Decisional Capacity. Guidance for Healthcare Ethics Committees. D. Micah Hester and Toby Schonfeld, eds. Cambridge University Press, 2012. pp. 55-62.

Limehouse W, Feeser VR, Bookman K, Derse AR. A Model for Emergency Department End-of-Life Communications after Acute Devastating Events - Part I: Decision-making Capacity, Surrogates, & Advance Directives. Academic Emergency Medicine. 2012; 19: 1068-1072.

Carrese JA, Matheny Antommaria AH, Berkowitz KA, Berger J, Childs B, Derse AR, Gallagher G, Gallagher JA, Goodman-Crews P, Heesters A, Jurchak M, Mitchell C, Mokwyune N, Parsi K, Powell T, Powderly KE, Rosell T, Shelton W, Smith ML, Spike J, Tarzian A, Wocial L. HCEC Pearls and Pitfalls: Suggested Do's and Don'ts for Health Care Ethics Consultants. Journal of Clinical Ethics, 2012; 23(3): 234-240.

Limehouse W, Feeser VR, Bookman K, Derse AR. A Model for Emergency Department End-of-Life Communications after Acute Devastating Events - Part II: Moving from Resuscitative to End of Life or Palliative Treatment. Academic Emergency Medicine. 2012; 19 (November): 1300-1308.

May T. Rethinking Clinical Risk for DNA Sequencing. American Journal of Bioethics 2012; 12 (10): 24-26.

Spellecy R. and May T. More than Cheating: Deception, IRB Shopping, and the Normative Legitimacy of IRBs. Journal of Law Medicine and Ethics. 2012; 40 (4): 990-996.

Kapfhamer J. Menon S, and Spellecy R. The Importance of Risk Tolerance in Maternal Autonomy. American Journal of Bioethics. 2012; 12(7): 53-62.

Denzen E., Burton Santibanez M., Moore H., Foley A., Gersten I., Gurgol C., Majhail N., Spellecy R., Horowitz M., and Murphy E. 2012. Easy-to-Read Informed Consent Forms for Hematopoietics Cell Transplantation Clinical Trials. Biology of Blood and Marrow Transplantation. 2012; 18 (2): 183-189.

Lipworth W, Strong KA, Kerridge I. Medical Ethics. In Bowden P, (ed), Applied Ethics: Strengthening Ethical Practices. Prahran, VIC Australia: Tilde Publishing and Distribution; 2012, 107-117.


2011

Articles and Book Chapters

Derse, AR. Legal and Ethical Issues in the United States. Chapter 24, in Emanuel LL, Librach SL. Palliative Care: Core Skills and Clinical Competencies 2nd Edition. Elsevier Saunders; 2011.

Derse, AR. Unlocking the Patient's Voice: The Diving Bell and the Butterfly and the Ethics of Self-Determination. Part Two, Chapter 3, in The Picture of Health. Medical Ethics and the Movies. Edited by Henri Colt, Silvia Quadrelli, Friedman Lester. Oxford Press; 2011.

Morgenweck, C. Discontinuing pacemakers, ventricular assist devices, and implanted cardioverter-defibrillators in end-of-life care. In Van Norman, G. (ed). Clinical Ethics in Anesthesiology. Cambridge University Press; 2011.

Morgenweck, C. and Jackson, Stephen. Physician conscientious objection in anesthesiology practice. In Van Norman, G. (ed). Clinical Ethics in Anesthesiology. Cambridge University Press; 2011.

Abstracts

Brasel K, Campbell BH, Morgenweck, CJ, Havas N , Derse AR. Both Sides of the Coin: Integrating Medical Humanities into Medical Education. The Examined Life: Writing and the Art of Medicine. 5th Annual Conference. Carver College of Medicine. University of Iowa. Iowa City, IA. April 21, 2011.

Derse AR, Uihlein JA, Morgenweck CJ, Brasel K, Havas N, Farrell M, Campbell BH, Chan CH. The Creation and Implementation of a Medical Humanities Program in a Free-Standing Medical School. Western Michigan University Medical Humanities Conference 2011. Kalamazoo, MI. September 29, 2011.

Derse AR, King NMP, Davis DS, Stockham C. Law for Non-Lawyers: Navigating the Law in Ethics Teaching and Ethics Consultation: Take Two. Pre-Conference Workshop. American Society for Bioethics and Humanities 13th Annual Meeting. Minneapolis, MN. October 13, 2011.

Derse AR. Campbell AT, Weinberg JK, Ouellette AM. Legal Update 2011: Top 10 Legal Developments in Bioethics and Public Health. American Society for Bioethics and Humanities 13th Annual Meeting. Minneapolis, MN. October 13, 2011.


2010

May, T. Wrong turns from worst worries. Science. 329; 24 Sept 2010:1601-1602.

Morgenweck, C. Discontinuing pacemakers, ventricular assist devices, and implanted cardioverter-defibrillators in end-of-life care. In Van Norman, G. (ed). Clinical Ethics in Anesthesiology. Cambridge University Press; 2011.

Morgenweck, C. and Jackson, Stephen. Physician conscientious objection in anesthesiology practice. In Van Norman, G. (ed). Clinical Ethics in Anesthesiology. Cambridge University Press; 2011.

Donate-Bartfield E., Spellecy, R., and Shane, N. 2010. Maximizing beneficence and autonomy. Ethical support for the use of nonpharmacological methods for managing dental anxiety. J Am Coll Dent ;77(3):26-34

Kodadek, L., Bettendorf, B., Uihlein, J., and Derse, A. The Memory Art Project: Medical Students and Older Adults. WMJ. 2010;109(6):311-316.


2009

Derse A. When I Lay My Burden Down: Commentary on Berger. Journal of Clinical Ethics. 20(2): 172-174; 2009.

Derse A. Social Media Consults May Harbor Dangers, Ethics Forum, American Medical News. February 15, 2010

Quest T, Marco C, Derse A. Hospice and Palliative Medicine: New Subspecialty, New Opportunities. Annals of Emergency Medicine, 54(1): 94-102; 2009.

Derse A. Choosing How You Die So Others Can’t: A Matter of Wishes Known and Fulfilled. Milwaukee Journal Sentinel, Crossroads, Section J, Page 1, Col 2; October 25, 2009.

Bradley C, Derse A, Brasel K. (letter) Surrogate Decision Making for a Pregnant Patient Refusing Emergency Caesarian Section. Surgery, 146: 964; 2009.

May T. Bioethics in a Liberal Society: The Political Framework of Bioethics Decision-Making. Johns Hopkins University Press; Reissued in paperback, 2009.

May T and Aulisio M. Personal Morality and Professional Obligations: Rights of Conscience and Informed Consent. Perspectives in Biology and Medicine, 52(1); 2009.

Hoop J and Spellecy R. Philosophical and Ethical Issues at the Forefront of Neuroscience and Genetics: An Overview for Psychiatrists. Psychiatric Clinics of North America, 32 (2): 437-449; 2009.

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