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?

Prenatal screening and testing technologies using genetic methods are rapidly expanding, offering increasing amounts of genetic information about the fetus. However, research shows that women from underserved populations are less likely to receive or accept prenatal genetic services, leading to discordant birth outcomes. We propose to explore the barriers to access and acceptance of prenatal genetic care among women from underserved populations.

PROJECT NARRATIVE This project is relevant to public health because achieving the health benefits of preventive gene editing research will depend on governance that is responsive to public concerns. This project is relevant to NHGRI?s mission because of the role that new genomic knowledge will play in the policy challenges that the research proposed here helps address.

This Pathway to Independence Award (K99/R00) will prepare the candidate to become an interdisciplinary ELSI researcher with a high-quality, independently funded research program exploring the influence of the genome sciences ? including epigenetics ? on conceptualizations and understandings of health, disease, and individual responsibility. This study examines conceptualizations of epigenetics related to children's psychiatric, behavioral, and neurodevelopmental health and their translation to community settings.

The annual meeting of the American College of Medical Genetics (ACMG) brings together a large proportion of basic and clinical investigators of rare genetic diseases. The organizers propose a series of workshops to be held in conjunction with ACMG meetings to consider issues related to identifying needs and opportunities for collaborative research involving rare genetic diseases (RGDs) associated with birth defects, mental retardation and developmental disabilities, and would set the stage for clinical and translational research.

In its first five years, the CWRU Center for Genetic Research Ethics and Law (CGREAL) explored a range of ethical, legal, and policy issues in the design and conduct of genomic gene-discovery research. We now propose to follow the trajectory of genomics into its "translational" phase, where its expanded research needs and higher clinical aspirations are creating new ethical, legal, and policy challenges.