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Juengst awarded Kenan Research Leave for Spring, 2022

December 6, 2021

The UNC Provost’s Office has awarded Eric Juengst a Kenan Foundation-supported university sabbatical for the Spring Semester of 2022. Juengst will pursue research exploring the revival of scientific interest in “good” human genes, by examining different forms of beneficial genomic variant research and their ethical and social implications. Kenan Research Leave proposals are awarded annually … 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

Passing the Torch at the UNC Center for Bioethics!

May 27, 2021

I am happy to announce that after 11 years as Director of the UNC Center for Bioethics, I am turning over that leadership role to Arlene Davis, RN, JD, effective July 1, 2021. It has been immensely fulfilling to oversee the flourishing of the C:B over the last decade. I am deeply grateful to the … Continued

Whole-Genome Sequencing for TB Source Investigations: Principles of Ethical Precision Public Health

May 26, 2021

BACKGROUND: Whole-genome sequencing (WGS) of Mycobacterium tuberculosis allows rapid, accurate inferences about the sources, location and timing of transmission. However, in an era of heightened concern for personal privacy and science distrust, such inferences could result in unintended harm and undermine the public´s trust. METHODS: We held interdisciplinary stakeholder discussions and performed ethical analyses of … Continued

Toward Better Governance of Human Genomic Data

January 15, 2021

Here, we argue that, in line with the dramatic increase in the collection, storage and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to both enable wide access and protect against possible harms. However, the merits and limitations of different governance frameworks in achieving these twin … Continued

“Prevention” and Human Gene Editing Governance

January 15, 2021

The Holocaust and the racial hygiene doctrine that helped rationalize it still overshadow contemporary debates about using gene editing for disease prevention. In part, this is because prevention can mean 3 different things, which are often conflated. Phenotypic prevention involves modifying the expression of pathogenic DNA variants to forestall their clinical effects in at-risk patients. … Continued