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

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.