"My Blood, You Know, My Biology Being out There ": Consent and Participant Control of Biological Samples.

The widespread and persistent underrepresentation of groups experiencing health disparities in research involving biospecimens is a barrier to scientific knowledge and advances in health equity. To ensure that all groups have the opportunity to participate in research and feel welcome and safe doing so, we must understand how research studies may be shaped to promote inclusion. In this study, we explored the decision to participate in hypothetical research scenarios among African American adults (n = 169) that varied on the basis of four attributes (form of consent, reason for research, institutional affiliation and race of the researcher). Findings indicate that participants were largely willing to contribute to biobanks but significantly preferred opportunities where they had control over the use of their biological samples through tiered or study-specific forms of consent. Broad consent procedures, although common and perhaps preferred by participants with high trust in researchers, may amount to an exclusionary practice.

Building Sustainable Organizational and Community Capacity for Research Partnerships: A Decade of Experience.

The purpose of this article is to share community partner perspectives of impact and lessons learned from a decade long community-academic partnership between the Collaborative Center for Health Equity at the University of Wisconsin-Madison, and the United Community Center/Centro de la Comunidad Unida, a nonprofit community-based organization providing services across the lifespan for Latino communities of Milwaukee. The partnership was established in 2010 to support bidirectional communication, trust building and mutual benefit though community engaged research and collaborative student teaching. Over the years, we have achieved a variety of outcomes on both sides of the partnership. For our community organization, the partnership has evolved to create substantial benefits through opportunities for new collaborations, service program development and grantsmanship. Several factors contributed to our success including sustained stable funding not tied to an individual research project and academic investment in community capacity.