PROJECT NARRATIVE: Recent recommendations to return children?s results for adult-onset conditions to parents anytime whole exome or genome sequencing is performed, as well as growing expectations to return research results to participants on a large-scale basis, mean adolescents will increasingly be engaged in assenting (<age 18) and consenting (>age 18) to return of genomic research results. There is an urgent need to understand adolescents?
PROJECT NARRATIVE The ability to recruit and protect research participants across multiple sites and multiple states is critical to the success of large-scale precision medicine and other biomedical research supported by the National Institutes of Health and other federal agencies to improve human health. Accomplishing this task requires a clear understanding of which state?s laws apply and under what circumstances, but the empirical and normative foundations for addressing choice of law questions in a research context are lacking.
PROJECT NARRATIVE In response to the continued underrepresentation of African Americans in aging research involving genetic material, this study seeks to test the feasibility of an innovative method to explore the interaction of multiple factors that influence the decision to participate in research that can be applied to representative samples of, typically underrepresented, participants. Through a gamified, card sort adaptation of a factorial survey design, we will examine a range of study ?attributes?
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.
PROJECT NARRATIVE Preparation is often cited as a reason for offering and for accepting prenatal genetic screening and diagnosis. However, this term has no clear definition, and thus it is impossible either to prove benefit or to recommend best practices.