Tuesday, May 1, 2012

Better Ethics Education Needed for Stakeholders in Community-Based Health Research

Loyola Bioethicist is Lead Author of Paper that Recommends Improvements in Ethics Education

MAYWOOD, Ill. -- A growing number of health research programs are collaborating with community groups to conduct research. The groups help recruit study participants, obtain informed consent, collect data and provide input on study design and procedures.

But existing programs that educate researchers, community groups and institutional review boards about research ethics "fail to meet the needs of all groups that have a role in community-engaged research," according to an article in the Journal of Empirical Research on Human Research Ethics.

First author of the study is Emily E. Anderson, PhD, MPH, an assistant professor in the Neiswanger Institute for Bioethics & Health Policy of Loyola University Chicago Stritch School of Medicine.

Community-engaged research has been defined as research that provides communities with a voice and role in the research process, beyond simply providing access to research participants.

Community-engaged research raises numerous unique ethical issues that have not been fully explored from the perspectives of all parties, Anderson and colleagues write. Academic and community partners sometimes have different goals, expectations, access to resources, work styles, types of expertise or interpretations of research results. Community-engaged research also may pose risks to all members of a group -- even those who do not participate directly in the research -- when findings potentially could label or stigmatize the entire group. Community partners also may experience distress when conducting research in communities where they work or live, due to feelings of responsibility beyond their research roles.

To address these and other ethical issues, the authors recommend numerous best practices for members of institutional review boards and those involved in community-engaged research partnerships. The authors also proposed a detailed research agenda for studying ethical issues in community-engaged research from the perspective of several stakeholders.

This effort was supported by the national Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through grants to several institutions.

Anderson, who is corresponding author of the article, has worked with several community-engaged research projects in Chicago. Her research interests include empirical research in bioethics, institutional review board policy and processes, health disparities and ethical issues in public health research and practice. She also has served on several institutional review boards.

Co-authors of the article are Stephanie Solomon of Saint Louis University, Elizabeth Heitman of Vanderbilt University, James M. DuBois of Saint Louis University, Celia B. Fisher of Fordham University, Rhonda G. Kost of Rockefeller University, Mary Ellen Lawless of Case Western Reserve University,  Cornelia  Ramsey of Virginia  Commonwealth University, Bonnie Jones of the University of North Carolina, Alice Ammerman of the University of North Carolina and Lainie Friedman Ross of the University of Chicago.

About Loyola University Health System

Loyola University Health System (LUHS) is part of Trinity Health. Based in the western suburbs of Chicago, LUHS is a quaternary care system with a 61-acre main medical center campus, the 36-acre Gottlieb Memorial Hospital campus and more than 30 primary and specialty care facilities in Cook, Will and DuPage counties. Loyola University Medical Center’s campus is conveniently located in Maywood, 13 miles west of Chicago’s Loop and 8 miles east of Oak Brook, Ill. At the heart of the medical center campus is a 559-licensed-bed hospital that houses a Level 1 Trauma Center, a Burn Center and the Ronald McDonald® Children's Hospital of Loyola University Medical Center. Also on campus are the Cardinal Bernardin Cancer Center, Loyola Outpatient Center, Center for Heart & Vascular Medicine and Loyola Oral Health Center as well as Loyola University Chicago Stritch School of Medicine, Loyola University Chicago Marcella Niehoff School of Nursing and the Loyola Center for Fitness. Loyola's Gottlieb campus in Melrose Park includes the 255-licensed-bed community hospital, the Professional Office Building housing 150 private practice clinics, the Adult Day Care, the Gottlieb Center for Fitness, Loyola Center for Metabolic Surgery and Bariatric Care and the Loyola Cancer Care & Research at the Marjorie G. Weinberg Cancer Center at Melrose Park.

Trinity Health is a national Catholic health system with an enduring legacy and a steadfast mission to be a transforming and healing presence within the communities we serve. Trinity is committed to being a people-centered health care system that enables better health, better care and lower costs. Trinity Health has 88 hospitals and hundreds of continuing care facilities, home care agencies and outpatient centers in 21 states and 119,000 employees.