Background on Centers for Excellence in ELSI Research Program

Other Centers for Excellence in ELSI Research

• Center for Genomics and Society at UNC-Chapel Hill
• Center for the Ethics of Indigenous Genomic Research (CEIGR)
• Stanford University School of Medicine Center for Integration of Research on Genetics and Ethics
• Utah Center of Excellence in Ethical, Legal and Social Implications Research
• GetPreCiSe: The Center for Genetic Privacy and Identity in Community Settings
• The Center for Bridging Infectious Disease, Genomics, and Society (BRIDGES)

Educational Videos

Looking for the Psychosocial Impacts of Genomic Information, Feb 27-28, 2018

Watch videos of all sessions from the 2-day conference here!

For the last quarter century, researchers have been asking whether genomic information might have negative psychosocial effects. Anxiety, depression, disrupted relationships, and heightened stigmatization have all been posited as possible outcomes—but not consistently found.  At this conference, we will ask what accounts for the discrepancy between these hypothesized outcomes and the effects that have been documented in empirical studies. Are we asking the right questions? Using the right tools? Looking in the right places? Or was the expectation of large, negative psychosocial impacts of genomic information overblown to begin with? Either way, where does research into the ethical and psychosocial implications of genomic medicine go from here?

Genomics and Society: Expanding the ELSI Universe: Click the titles below to watch the kenote and plenary talks at the 4th ELSI Congress on June 5-7, 2017

Innovating Ourselves for the Era of Precision Health 

• Stephanie Devaney, Keynote Speaker, Deputy Director, NIH All of Us (Precision Medicine Initiative) Program

All of Us: What are the Ethical, Legal and Social Implications for All of Us?

• Pearl O’Rourke, Director of Human Research Affairs at Partners HealthCare Systems in Boston, Associate Professor of Pediatrics, Harvard Medical School

Reinventing ELSI

•  Wylie Burke, Professor, Department of Bioethics and Humanities, University of Washington

Plenary Panel: Genomics and Society: Expanding the ELSI Universe

• James Evans, University of North Carolina
• Pearl O’Rourke, Harvard Medical School
• Wylie Burke, University of Washington
• Paul Appelbaum, Columbia University (Moderator)

Click here to see the conference videos from:
Genetic Testing in Neurologic Disorders 2014: Developments and Dilemmas
In the swiftly changing world of genetic testing, neurological disorders pose their own specific risks and dilemmas. This conference brings together the latest developments in genetic testing for neurologic disorders, viewed through the perspectives of physicians, researchers, people at risk, ethicists, and community-based groups.

Speakers include Paul Appelbaum, MD; Jacinda Sampson, MD, PhD; Wendy Chung, MD, PhD; Mary Edmondson, MD; Suzanne Carter, MS, JS; Alejandro Iglesias, MD; Chaim Jalas; and Arthur Caplan, PhD. (June 6 2014)

Click here to see the video:
Predicting Alzheimer Disease: The Social and Legal Complications
Hank Greely, JD (June 2014)

Click here to see the video:
Epigenetic Regulation in Schizophrenia and Related Disease
Schahram Akbarian, MD (March 2014)

Autism — what we know (and what we don’t know yet)
Wendy Chung: TED Talk on Autism (March 2014)

In this factual talk, geneticist Wendy Chung shares what we know about autism spectrum disorder — for example, that autism has multiple, perhaps interlocking, causes. Looking beyond the worry and concern that can surround a diagnosis, Chung and her team look at what we’ve learned through studies, treatments and careful listening.

Click here to see the video:
The Structure of Psychiatric Science and Decision Making in Gene-to-Phenotype Pathways
Kenneth Kendler, MD (February 2014)