PROJECT NARRATIVE Health systems could work with genetic patients by directly notifying relatives who receive care in the same health system, but no U.S.-based care models have emerged and many questions with ethical and social implications remain. We propose a human-centered design and feasibility study of health system-led familial outreach and risk notification.

The overall goal of this project is to understand how to encourage and enable people who are developing artificial intelligence for personalized health care to be aware of values in their daily practice. We will examine actual practices and contexts in which design decisions are made for precision medicine applications, and use this information to design group-based workshop exercises to increase awareness of values.

Project Narrative Studies suggest that distrust is a major barrier for participation of minorities in Precision Medicine Research (PMR), though no study has examined the sources of (dis)trust and factors affecting views on trustworthiness of PMR among people with disabilities. This study proposes to engage with people with mobility, visual and hearing disabilities?the most common conditions in the U.S.?across racial/ethnic communities and with translational genomic researchers, the leaders in PMR, to close this gap.

PROJECT NARRATIVE Our overall objective is to make progress toward mitigating the challenges that un/underinsured participants in the All of Us Research Program may face when they access care for medically actionable genetic research results. Un/underinsured patients are typically left of out advances in genomics because they cannot afford to follow-up on research findings in the clinical setting, and face myriad barriers to accessing specialized care for lifelong disorders (e.g.

PUBLIC HEALTH RELEVANCE: Researchers engaged in conducting genetic and genomic science are significant players in advancing biomedical science and health care. Through their work, they are a vital part of the ethical, legal, and social outcomes of science, but there is a gp in knowledge concerning how genomic scientists navigate the complex ethical, legal, and social issues related to their research.

PROJECT NARRATIVE The proposed study contributes to the long-term goal of advancing diverse participation in precision medicine research by mapping the contours of why people, especially African Americans and Latinos, decline, enroll, and stay engaged in the All of Us Research Project. This knowledge will contribute towards the alignment of recruitment and retention strategies in All of Us and similar precision medicine research projects with participants? values and expectations.

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.

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.

While great strides are being made in identifying early signs that place people at a ?high risk state? for different illness conditions, at the same time, advances are being made in the identification of genes associated with ?high-risk states?. This study proposes to develop two innovative clinical tools that could greatly facilitate dissemination of a beneficial genetic malleability framing to high-risk youth in order to encourage increased treatment engagement and uptake of healthy behaviors. The impact of genetic information assumes special importance in the ?high-risk state?

PROJECT NARRATIVE The goal of the biennial ELSI Congress is to provide a dedicated, regularly scheduled meeting for researchers focused on the ethical, legal and social implications of genetic and genomic research and its translation into clinical care.