A Short Course on
Racial and Ethnic Minorities as Research Subjects
Challenges for Research Ethics





CALL FOR NOMINATIONS AND APPLICATIONS





           

 


AAAS
1200 New York Avenue, NW
Washington, DC 20005
shortcourse@aaas.org

 

 
OVERVIEW OF COURSE

Race and ethnicity are increasingly used as variables in research. Federal requirements call for more inclusion of minorities in clinical studies that can detect and account for "significant differences between genders or racial and ethnic groups where they exist." Accordingly, researchers must give serious attention to the ethical issues associated with the use of members of racial and ethnic minority populations as research subjects and to ways that will help ensure that recent efforts towards racial and ethnic inclusiveness yield a positive balance of benefits to burdens for minorities. Racial and ethnic minorities have not equitably reaped the full benefits of science, and in some cases have disproportionately experienced adverse effects.

This course will examine the historical and contemporary contexts that require deeper reflection of the ethical issues regarding social and scientific understandings of race and ethnicity. The course will explore how scientists' values and assumptions influence the meaning and content of racial and ethnic categories, choice and framing of research questions, variables for analysis, the interpretation of data, and the reporting of research results.

The course will help researchers identify barriers, such as varying communication patterns and expectations that may impede minority participation in research, provide examples of strategies for overcoming those barriers, examine successful and unsuccessful attempts at building relations of trust, and identify resources where researchers can obtain additional information. Since race and ethnicity and associated issues are difficult subjects to address, pedagogical strategies for discussing and teaching this subject matter will be included to assist participants in developing resources and techniques for engaging others on these issues. Between course sessions, participants are expected to pilot acquired course strategies and materials at their home institutions. Time will be set aside at several course sessions for them to share their experiences with other participants and faculty.

Additionally, the course will be structured to provide ample opportunity for dialogue between faculty and participants in both plenary and breakout sessions. Participants will be encouraged to discuss their professional experiences and on-going work with faculty and each other and to consider how the course acquired knowledge and materials can be integrated into and faciliate their work.

 
COURSE OBJECTIVES
· Improve skills of researchers and those responsible for designing and evaluating research protocols in anticipating and addressing the ethical concerns that may arise when members of racial and ethnic minority populations participate in research.

· Assist participants in designing materials and pedagogical strategies for training in the ethics of conducting research involving minority populations.

Upon completion of the course, participants should be able to:

· Recognize and critically assess ethical issues associated with involving racial and ethnic minorities as research subjects.

· Design and evaluate research protocols sensitive to the ethics of conducting research with racial and ethnic minority populations.

· Implement and evaluate educational programs at their home institutions.

 
COURSE TOPICS
Among the course topics include the following:

· Scientific Construction of Race and Ethnicity
· Engaging Communities of Color in Research
· Designing Research Studies Involving Minority Participants
· Race and Ethnicity as Variables in Research
· Ethical Issues in International and Cross Cultural Research
· Informed Consent and Community Consultation
· Developing Culturally Responsive Informational/Educational Materials Benefits, Burdens, and Subject Selection - Issues of Justice
· Issues of Privacy, Confidentiality, Discrimination, and Stigmatization
· Interpreting and Reporting Research Results: Responsibilities to Research Subjects and Their Communities
· History and Assessment of Human Research Subjects Policy in the U.S.
· Pedagogical Challenges, Strategies and Curricular Materials

 
PARTICIPANTS

The course is intended for anyone who uses human subjects in their research, oversees human subjects research, represents human subjects, or teaches biomedical or research ethics. For example, these include scientists engaged in basic and clinical medical and behavioral research, faculty teaching courses on the ethics of human subjects research, members of Institutional Review Boards, research program directors, members of community-based groups or patient organizations, and representatives from companies supporting clinical trials. Participants will be selected with special attention to the breadth and diversity of the entire group as well as the credentials and potential contribution of individual applicants.

 
PARTICIPANT SUPPORT
Participants will have their on-site expenses (lodging and meals) covered for each of the four course sessions. They will be expected to cover their travel costs to the sessions. A limited amount of travel funds will be available to assist those who are unable to cover all their transportation costs.
 
ADVISORY COMMITTEE
Annette Dula, EDD
University of Colorado at Boulder		   Vivian Ota Wang, PhD, MS, MPhil
Arizona State University

Judy Gobert
Salish Kootenai College, Montana

  Victor B. Penchaszadeh, MD, ScM
Beth Israel Medical Center, New York
Joseph McInerney, MS, MA
Johns Hopkins University School of Medicine 		  Jeremy Sugarman, MD, MPH, MA
Duke University Medical Center
 
DATES AND LOCATION
 
The first three sessions of the course will be held in the Washington, DC area, while the final session will convene at Tuskegee University. The dates for the four course sessions are as follows: October 20-22, 2000; December 1-3, 2000; March 16-18, 2001; and May 18-20, 2001. Each session will begin early on Friday and conclude by 3:00pm on Sunday.
 
COURSE DIRECTORS AND SPONSORING INSTITUTIONS

Co-directors of the short course are Mark S. Frankel, Ph.D., Director of the Scientific Freedom, Responsibility and Law Program at the American Association for the Advancement of Science, Pilar Ossorio, Ph.D., J.D., Assistant Professor of Law and Medical Ethics, University of Wisconsin, and Marian Gray Secundy, Director of the National Center for Bioethics in Research and Health Care at Tuskegee University.

The American Association for the Advancement of Science (AAAS) is the world's largest multidisciplinary scientific association and publisher of Science. The Association's Program on Scientific Freedom, Responsibility and Law conducts research, policy analysis, and develops educational programs/materials on issues at the intersection of ethics, law and science.

The Tuskegee University National Center for Bioethics in Research and Health Care works with the local, regional, national, and international communities in areas addressing ethical and human values issues in science, technology, and health as they impact people of color. Tuskegee University promotes sensitive and effective health care ecosystems relative to people of color, assists in eliminating racial disparities in medical healthcare delivery, and serves as a clearinghouse and resource in cultural diversity.

  The University of Wisconsin at Madison is the flagship institution of the Wisconsin state university system. The University's Center for the Study of Race and Ethnicity in Medicine works to analyze the implications of increasing demographic diversity in the US for the practice of medicine, for biomedical research and for medical education. The interdisciplinary Medical Ethics Program sponsors both educational and research activities.

 
NOMINATIONS AND APPLICATION PROCESS
Institutions are encouraged to nominate candidates for the short course and individuals are welcome to apply directly. In either case, a formal application must be submitted to be considered for participation in the course. It is expected that up to 25 applicants will be selected to participate. An application form can be obtained either in hard copy or electronically from Sanyin Siang, Scientific Freedom, Responsibility and Law Program, American Association for the Advancement of Science, 1200 New York Ave., NW, Washington, DC 20005; phone 202.326.6218; fax 202.289.4950; shortcourse@aaas.org. In addition to a completed application form, applicants must submit two letters of reference, one of which should be from the applicant's immediate supervisor. Applicants will be notified of a final decision by June 15, 2000.

DEADLINE FOR APPLICATIONS IS APRIL 7, 2000