A Case Study on A University-Community Partnership to Eliminate Racial Disparities in Infant Mortality: Effective Strategies and Lessons Learned
In: Social work in public health, Band 34, Heft 8, S. 673-685
ISSN: 1937-190X
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In: Social work in public health, Band 34, Heft 8, S. 673-685
ISSN: 1937-190X
In: Journal of empirical research on human research ethics: JERHRE ; an international journal, Band 19, Heft 1-2, S. 3-15
ISSN: 1556-2654
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.