Ethics

Event Spotlight: Global Genomics Conference

Genomics and Society: expanding the ELSI universe


UConn Health and The Jackson Laboratory Host Global Genomics Conference

Good genomics research requires healthy curiosity, powerful data analysis, rigorous scientific methodology — and a strong ethical grounding. UConn Health and the Jackson Laboratory for Genomic Medicine co-hosted the Ethical, Legal, and Social Implications Research Program’s (ELSI) fourth-annual conference June 5 through 7 to explore how ethical decisions surrounding genomic discoveries are informed by the legal and social context of our society.

Nearly 300 people attended the three-day “Genomics and Society: Expanding the ELSI Universe” conference, which brought experts from around the world to UConn Health in Farmington, Connecticut, to discuss both what we can do with our genomic knowledge and the responsibilities that come with that power.

“The increase in genomic testing and technology are fueling breakthrough discoveries here in Connecticut and around the globe for heart disease, cancer, and a host of rare diseases,” said Dr. Bruce T. Liang, dean of UConn School of Medicine. “However, these promising personalized medicine therapies and our greater genetic knowledge may also come with a steep societal price if we don’t address the associated concerns in a timely fashion.”

Keynote speakers from the National Institutes of Health (NIH) and universities across the country spoke about the ethics of genomics in the clinical setting; the relationship between genes, ancestry, and identity; and the NIH’s All of Us initiative. All of Us seeks to broaden the genetic database used for research in the United States so that it more accurately reflects the citizenry and the differences in lifestyle, environment, and biology encountered in different populations across the country.

Much of the funding for ELSI comes from the National Human Genome Research Institute, with the goal of supporting research that anticipates and addresses the societal impact of genomic science. The institute has four broad priorities: genomic research; tracking how that research influences health care; exploring how social norms and beliefs affect how we understand genetic advances and how we use them; and legal, regulatory, and public policy issues. Workshops at the conference covered specific topics from those areas, including the implications of genetic testing in the criminal justice system; the uses and misuses of the gene editing technique known as CRISPR; and the controversies over the appropriate use of genetics in psychiatric, neurologic, and behavioral fields.

More information about the ELSI project.