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 Currently, there are marked differences in variant classification among clinical laboratories, and genetic variant classification is currently in flux with improvements in the access to ethnically diverse reference data and new algorithms to predict the pathogenicity of variants. As variants are re-classified over time, there is currently no definitive guidance from professional organizations about how to handle this variant reclassification and who has the duty to re-classify variants and what those obligations are.
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 The central goal of the proposed research is to determine the cost-effectiveness of integrating whole genome sequencing into the care of healthy adults. We will assess the health impact and cumulative healthcare costs of participants of a randomized clinical trial of whole genome sequencing five years after they received results, and we will extend these analyses over patients' lifetimes using decision analytic models. Findings will inform development of clinical guidelines and reimbursement strategies to accelerate the integration of sequencing into medical care.
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.
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.