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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 the links below to see the 2017 Annual Conference videos:

Ethical Tangles in Neurodegenerative Disease Research: Targeting Participants at Genetic Risk

Part 1:

  •  Clinically Pre-manifest Studies in Neurodegenerative Disease: Overview of Study Design and Ethical Issues 
  •  The Colombian Alzheimer Prevention Initiative:  ELSI of Preclinical AD Research in a Developing Country 
  • Preclinical Research and Genetic Testing in Neurodegenerative Disorders: Psychosocial Impacts on Participants and Families 
  • ELSI of Treatment and Prevention Research on Spinal Muscular Atrophy 
  • Panel Discussion with Research Participants

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)

Wendy Chung: TED Talk 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)