Community Advisory Board

In parallel with establishing an access process, both the SPS research team and MPHC agreed that community input would be essential for transparency, broader engagement, shared decision making for complex ethical issues, and overall governance of the biobank. To facilitate these goals, a CAB was established through MPHC. A bilingual/bicultural CAB coordinator was hired by MPHC and charged with recruitment of members that would be comprised of MPHC patients, SPS Biobank participants, community members, and other stakeholders. CAB meetings have been held every other month at MPHC and include general research education, updates on the progress of the SPS Biobank, presentations by researchers with active SPS Biobank protocols, and opportunities for the CAB to provide feedback and advice. Case studies and real life examples are used to stimulate discussion among CAB members. CAB meetings are conducted in Spanish since many members are monolingual Spanish-speaking, with simultaneous translation provided for attendees and non-Spanish speaking presenters. Although the CAB can play a role in providing input on perceived benefits, risks, and the impact of research on the community, they serve as an advisory, not approval, board.