News and Events

The Impact of Dobbs on Emerging Reproductive Technologies —– Join us on Friday, March 8, 2024 at 12pm ET for the next ELSI Friday Forum session: The Impact of Dobbs on Emerging Reproductive Technologies, with panelists Sigal Klipstein, MD, FACOG (InVia Fertility Specialists; University of Chicago), Judith Daar, JD (Chase College...

Twisted Helix: Can Public-Private Partnerships in Large-Scale Genomic Projects Be Fair and Equitable? —– Biotechnological innovation almost always entails all three strands of the triple helix: academia, government, and industry. This is increasingly true for large scale genomics and biomedical research projects such as the Human Pangenome Reference Consortium, and...

Polygenic Risk Prediction in Diverse Populations and Contexts: Scientific and Ethical Considerations —– The differential performance of polygenic risk scores (PRS) by population genetic background is a well-known scientific concern and one of the most important barriers to their equitable translation for clinical use. Not only must the social repercussions...

Since its creation in 1990, the Ethical, Legal and Social Implications (ELSI) Research Program has funded hundreds of research projects, conferences, and other activities-through grants and contracts. This has resulted in many peer reviewed journal articles, books, newsletters, websites, television and radio programs and educational materials. Many of these products...

The first seminar in the Carolina Seminar Series: “Science meets society at the intersection between precision medicine and justice, equity, and inclusion.”​ Empowering trust: Insights from Community Engagement Initiatives Community engagement continues to be a critical component in genomic medicine and precision health research where the overall goal is to...

Join us on December 8, 2023 12:00 PM for the next ELSI Friday Forum: Affirming Sex and Gender Diversity in Genetics Practices, Policies, and Law: A Call to Action Join panelists: Kimberly Zayhowski, MS, CGC, and Kellan Baker, PhD, MPH, MA. Moderated by Mildred Cho, PhD. There are already many barriers to...

November 10, 2023 – The Genomics of PTSD Risk: Scientific and Ethical Perspectives Watch the recording here Post-traumatic stress disorder (PTSD) can develop following a traumatic event such as natural disaster, sexual or physical assault, or war. Not all people exposed to the same trauma will develop PTSD—rates differ based...

A workshop sponsored by the UNC Center for Genomics and Society, Center for Bioethics, and Program for Precision Medicine in Health Care. For graduate students, postdocs, faculty, and clinicians who are interested in research, regulations and policies regarding the development and integration of neural platforms into translational science, and health...

Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions —– Since application of the first individualized therapy in 2019, development of these bespoke treatments has expanded rapidly. Individualized therapies—including directly administered vectored gene therapy, genetically modified cellular therapies, and antisense oligonucleotides, among others—refer to products designed to treat...

Population Descriptors in Genomic Research: Applying the NASEM Recommendations —– History demonstrates that the potential for typological thinking continues to be a hazard of genetic research involving human groups. In 2022 the NIH commissioned a NASEM study on the Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics...