Meaningful research in the Human Virome Program (HVP) will require the collection of vast amounts of information - a process that raises a host of novel ethical, legal, and social implications (ELSI). To address these challenges, we have assembled an ELSI Core for this Virome Characterization Center (VCC) that is multidisciplinary in its design, incorporating expertise in bioethics and law, public policy, informatics, and data privacy.
Debate over figure connecting genes, race and ethnicity reignites concerns among geneticists about how to represent human diversity.
Six years ago, the National Institutes of Health placed its biggest ever bet on precision medicine, launching a study to enroll over 1 million participants in an ambitious data-gathering gambit unmatched in its scope and diversity.
The incorporation of genetics and genomics into medical care and the public domain raises new challenges for how we understand privacy and identity, concepts that have long been closely linked in American discourse.
ELSIcon2022 • Networking Session • May 31, 2022
Katherine Blizinsky, Subhashini Chandrasekharan
The National Institutes of Health’s All of Us Research Program has issued a Request for Information (RFI) to gather public suggestions on integrating environmental health data into its platform for data analysis, the Researcher Workbench.
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.
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 application builds on the R01 study the Ethics of Inclusion: Diversity in Precision Medicine Research and aims to investigate the preferences of African American and Hispanic/Latino communities, including the uninsured, who are being recruited into precision medicine research for different types of genetic test results and their expectations and needs for information and resources to allow for informed, validated follow-up of research results and clinical care.