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Beyond the Medical: The ELSI of Polygenic Scores for Social Traits

August 12, 2022

UNC Center for Bioethics core faculty member Jean Cadigan, Ph.D., along with a multidisciplinary team of researchers from across the country, was recently awarded an R01 grant from the National Human Genome Research Institute at NIH entitled, Beyond the Medical: The ELSI of Polygenic Scores for Social Traits.

Hospital Policies During COVID-19: An Analysis of Visitor Restrictions

January 23, 2022

Abstract Objective: In response to the COVID-19 pandemic, hospitals have developed visitor restriction policies in order to mitigate spread of infection. We reviewed hospital visitor restriction policies for consistency and to develop recommendations to highlight fair and transparent restrictions, exceptions, and appeals in policy development and implementation. Design: Collection and analysis of public-facing visitor restriction … Continued

Attitudes About Analytic Treatment Interruption (ATI) in HIV Remission Trials with Different Antiretroviral Therapy (ART) Resumption Criteria

January 8, 2022

HIV remission trials often require temporary stopping of antiretroviral therapy (ART)—an approach called analytic treatment interruption (ATI). Trial designs resulting in viremia raise risks for participants and sexual partners. We conducted a survey on attitudes about remission trials, comparing ART resumption criteria (lower-risk “time to rebound” and higher-risk “sustained viremia”) among participants from an acute … Continued

Online Training as a Means to Improve the Understanding of Ethical, Legal, and Social Aspects of Biobanking Research: Stakeholder Perspectives from South Africa

December 20, 2021

Introduction: The proliferation of biobanking activities demand a review of current training opportunities for service providers and researchers, specifically related to the ethical, legal, and social issues (ELSI) of biobanking research. Such information could be useful for planning and developing an educational course. However, it is equally important to explore the platform for offering such … Continued

The View from the Benches: Scientists’ Perspectives on the Uses and Governance of Human Gene-Editing Research

August 26, 2021

The advent of human gene editing has stimulated international interest in how best to govern this research. However, research on stakeholder views has neglected scientists themselves. We surveyed 212 scientists who use gene editing in their work. Questions captured views on oversight and use of somatic and germline human gene editing for treatment, prevention, and … Continued

A New Governance Overnance Approach to Regulating Human Genome Editing

December 10, 2020

For years, genomic medicine—medicine based on the growing understanding of the genetic contribution to many diseases and conditions—has been hailed as the future of medical treatment, but it has thus far had limited effect on day-to-day medical practice. The ultimate goal of genomic medicine has always been the ability not just to identify dangerous gene … Continued

Recommendations from Thai Stakeholders About Protecting HIV Remission (‘cure’) Trial Participants: Report from a Participatory Workshop

November 1, 2020

Background The social/behavioral HIV Decision-Making Study (DMS) assesses informed consent and trial experiences of individuals in HIV remission trials in Thailand. We convened a 1-d multi-stakeholder participatory workshop in Bangkok. We provide a meeting summary and reactions from DMS investigators. Methods Workshop members viewed de-identified interview excerpts from DMS participants. They deliberated on the findings … Continued

Parallel but connected: Nuances of conducting behavioral and social science research alongside ethically challenging HIV remission trials

June 25, 2020

Collaborations between clinical investigators and behavioral and social science researchers (BSSR) produce many benefits, but also may generate challenges and complexities. Ongoing relationships between teams may affect the research carried out by the BSSR team and the way they interpret their findings. Here we describe our experiences conducting the HIV Remission (‘Cure’) Trials Decision-Making Study … Continued

Incidental Enhancements: A Neglected Governance Challenge for Human Genome Editing Research

June 25, 2020

The increasing pace and international diffusion of developments in human genome editing research have prompted ongoing efforts to develop responsible governance for such research. One point of broad agreement across these efforts is that human genome editing research should prioritize medical applications over attempts to enhance human traits because of the moral concerns the latter … Continued