Narrative The diversification of genomics research cohorts is a national priority intended to accelerate research and improve individualized prevention, treatment and care. Concrete, tailored strategies are needed to ethically engage various individuals living in the rural South to promote equitable access to genomic discovery and translation. Thus, the proposed study leverages a multi-disciplinary team and stakeholder-engaged approach to ultimately identify best practices for community translation of genomic discoveries.
PROJECT NARRATIVE Very little research has been done regarding non-STI-related health disparities affecting sexual and gender minorities (SGM). Even less is known about what these minorities think about the desirability of research that combines genetic variation and data about sexual orientation and gender identity with other health and demographic information, strategies required to understand and address these disparities.
Project Narrative This project will identify and reduce ethical and practical barriers to sharing qualitative research data. It will develop new resources to increase data sharing in an ethical manner, which will improve the quality of research data, facilitate new research in a cost-effective manner, and foster the training of new researchers.
Project Narrative This study would be the first to develop an initial bioethics framework to meet a critical gap in biomedical data modeling activities, where the downstream consequences of developing data models without careful and comprehensive review of ethical issues can be severe?not least because poorly developed data models have the potential to impact adversely the health of individuals, groups, and communities.
PROJECT NARRATIVE This project will identify ways to demonstrate respect to prospective research participants that incorporate the perspectives of diverse patient populations who have been historically underrepresented in research. Demonstrating respect in a way that is meaningful to patients from diverse backgrounds has the potential to contribute positively to trusting, collaborative investigator-participant partnerships and to increase recruitment and retention in both the short term and the long term.