The 5th Annual CCTS Bioethics Forum took place on Monday, February 3rd in Birmingham, Alabama at the UAB Hilton. A record-breaking attendance gathered to discuss Engagement of Diverse Populations in Research: Challenges & Lessons Learned from Cohort Studies.
Faith Fletcher, PhD, MA, Assistant Professor of Health Behavior and Co-lead of the CCTS Engagement of Communities effort, and Stephen Sodeke, PhD, MA, Professor of Bioethics at the Center for Biomedical Research and Modern Languages, Communication, and Philosophy at Tuskegee University opened the forum with a reminder that everyone in research shares the same barriers to engaging research participants. “It was a relief to see that different researchers face many of the same challenges as we do. Even better was to have the opportunity to listen to some of the ways they tackle these challenges to build a better environment for their participants/communities,” shared Gustavo Schaun, early-stage investigator in the department of Cell, Developmental and Integrative Biology at UAB.
The forum consisted of real examples of engagement obstacles through the following studies:
Alabama Genomic Health Initiative (AGHI) - Unlocking the potential in the human genome is part of the future of health care, and as the state’s leader in genomic medicine, UAB Medicine is taking a major step forward with the Alabama Genomic Health Initiative (AGHI).
All of Us Research Program - All of Us is a new research program from the National Institutes of Health (NIH) with the goal of advancing precision medicine, health care that is based on you as an individual.
Jackson Heart Study - The Jackson Heart Study exemplifies a unique collaborative model among Jackson State University, the Mississippi State Department of Health, Tougaloo College and the University of Mississippi Medical Center to discover and test best practices for eliminating health disparities.
Risk Underlying Rural Areas Longitudinal (RURAL) - The RURAL (Risk Underlying Rural Areas Longitudinal) Cohort Study aims to address critical gaps in our knowledge of heart and lung disorders in rural counties in the southeastern US.
Multicenter AIDS Cohort Study/Women’s Interagency HIV Study Combined Cohort Study (MACS/WIHS-CCS) - This combined cohort study aims to advance knowledge of HIV infection, with a focus on HIV-related comorbidities, investigating the progression of HIV disease in men and women.
The panel discussions and keynote lecture are both available for viewing on the CCTS Video Channel. Note: Due to technical difficulties during the event, the recording is edited.
Want to continue learning about ethics issues? Dr. Sodeke will present Legacy of Syphilis Study and Ethical Considerations for Health Disparities Research with Older Adults: A Bioethics Dialogue at an upcoming Resource Centers for Minority Aging Research (RCMAR) webinar on February 14th, 2020. Click here for more details and to register via Zoom.
Special thanks to the 5th Annual Bioethics Forum Planning Committee: David Chaplin, MD, PhD, Faith Fletcher, PhD, MA, Bruce R. Korf, MD, PhD, Chiquita Lee, BS, MBA, Lucio Miele, MD, PhD, Mariko Nakano, PhD, Becky Reamey, PhD, Stephen Olufemi Sodeke, PhD, MA