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 the Earth BioGenome, Human Cell …
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 of how people are grouped …
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 are included in this database …
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 improve health outcomes of communities. …
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 appropriate health care for transgender, …
Balancing Data Privacy and Data Sharing: Normative and Technical Approaches To maximize benefits for patients, broad access to comprehensive genomic datasets is necessary. However, data sharing is in tension with privacy obligations to individuals and groups, and threatens autonomy and control over data use. Data sharing policies, governance strategies and technical solutions have been …
Autism Genomics Research: Parents’ Views on Genetic Results and Autistic Representation Decades of research into the genetics of autism suggest that genes play a significant but also complex role in autism. Studies of the experience of families participating in such studies also report variation, both in their expectations for the research and the impact its …
New ACMG Guidance on Carrier Screening: More or Less Equitable? Next-generation sequencing capabilities have enhanced general population carrier screening by expanding the number of genes and variants on carrier screening panels. Professional recommendations are shifting towards universal screening, that is: screening that is not limited to populations by race or ethnicity and more inclusive of …
Tuesday, Oct. 26, 4:00p – 5:00p Nobel Laureate Jennifer Doudna, PhD CRISPR: Rewriting DNA and the Future of Humanity. Click here to register – https://duke.qualtrics.com/jfe/form/SV_bEKXMF9CZMokVcq
Following a break in August 2021, the 2nd ELSI Friday Forum series will begin in September. September 10, 2021 – Remembering 9/11: Ethical, Legal and Social Issues with Using DNA for Disaster Victim Identification – details coming soon Amy Mundorff, PhD Jay Aronson, PhD Moderated by Jennifer Wagner, JD, PhD.
