243851 New millennium, old scars: Engaging marginalized and vulnerable communities in biobehavioral research

Monday, October 31, 2011: 3:10 PM

Bridgette Mercedez Brawner, PhD, APRN , Center for Health Equity Research, School of Nursing, University of Pennsylvania, Philadelphia, PA
Melissa Gomes, PhD, RN , School of Nursing, Virginia Commonwealth University, Richmond, VA
Background: Marginalized and vulnerable communities have historically been abused by research. Resultant mistrust negatively affects biobehavioral research participation. Without adequate representation of marginalized and vulnerable communities in scientific inquiry, health advances from integrated biological and behavioral measures may be hindered for these populations. This study aimed to: 1) explore attitudes and beliefs among urban adolescent females (aged 12 to 19) currently receiving outpatient mental health treatment, and their parents/guardians, about participating in biobehavioral research, and 2) determine the acceptability of collecting biomarkers via blood, saliva and/or urine specimens. Methods: A survey and one 2-hour focus group were conducted with members of the target demographic. Descriptive statistics describe the sample demographics, and frequency counts explore reported attitudes and beliefs. Focus groups transcripts were analyzed through thematic content analysis. A total of 24 adolescents and 24 parents/guardians participated in the study. Results: A large degree of skepticism and mistrust for research exists, with particular concern for “guinea pig” studies that involve the collection of blood and genetic information. Some, however, viewed participation as a way to learn new about their health. Altruism also emerged with beliefs that research participation could “save a life” in the future. Conclusions: Negative research perceptions are still prominent in people's minds, even if they don't personally know someone who was mistreated. Researchers and communities must partner together to ensure ethical treatment throughout the research process, as well as adequate representation of marginalized and vulnerable communities in biobehavioral studies. Positive research attitudes should be bolstered to facilitate participation.

Learning Areas:
Advocacy for health and health education
Diversity and culture
Public health or related nursing
Public health or related research

Learning Objectives:
1. Discuss attitudes and beliefs about participating in biobehavioral research among mentally ill urban adolescent females and their parents/guardians. 2. Formulate a working understanding of the concerns mentally ill urban adolescent females and their parents/guardians have about research that involves the collection of blood, saliva and/or urine samples. 3. Identify concrete strategies to partner with marginalized and vulnerable communities in biobehavioral research initiatives.

Keywords: Research Ethics, Marginalization

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I conducted the research and have experience in working with vulnerable and marginalized communities
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.