PROJECT NARRATIVE Human genome editing is a powerful tool for creating precise changes to the genome, the complete set of genetic material. However, human genome editing raises significant ethical, legal, and social challenges, and making policy that can better anticipate and prepare for these challenges is urgently needed. This project will be the first comprehensive empirical study to apply strategies of anticipatory governance to the management and control of human genome editing technologies.
The goal of ELSI.hub, a National Center for ELSI Resources and Analysis, is to serve as a locus for resource sharing and community building to enhance the production, sharing, and use of research on the ethical, legal, and social implications of genetics and genomics (ELSI research).
PROJECT NARRATIVE Little is known about how health care providers (HCPs) will react to, and use, genomic information in patient care. The goal of this study is to understand how genomic information impacts HCPs and to make recommendations that will enhance HCPs' ability to successful integrate this information into clinical medicine.
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 When Americans interact with everyday technology such as mobile applications and websites, they leave behind digital footprints that can reveal a great deal about individual health. The proposed research will define the emerging ?health-relevant digital footprint? and evaluate consumer preferences around use of information from inside and outside the health care system.
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.
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.