Bioethics Research at the Medical College of Wisconsin

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-Principal 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.

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.)