Genomics and ethics congress at UCONN and JAX

ELSI Conference 2017 

This week nearly 300 people attended the three-day 2017 ELSI Congress on “Genomics and Society: Expanding the ELSI Universe” on the campus of UConn Health and The Jackson Laboratory for Genomic Medicine.

Presenters and attendees gathered from around the world and included physicians, geneticists, genetic counselors, social scientists and lawyers, in academia, government and industry.

Together, the ELSI Congress attendees learned about and shared the latest research that has sprung from the ethical, legal and social implications of genomic research advances. Event activities included more than 150 expert panel discussions, individual paper and poster presentations, and workshops.

Dr. Paul Appelbaum, director of the Columbia University Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral Genetics kicked off the three-day event on the morning of June 5.

Addressing the large crowd Appelbaum stressed, “The ELSI Universe is growing and we embrace that growth.”

Also, Edison Liu, M.D., president and CEO of The Jackson Laboratory spoke to the ELSI Congress about the advances in genomics, sharing: “One of the most exciting challenges are adjacency, speed and integration.” Liu added: “Expanding the ELSI Universe is exactly the right way that you are going. The importance of your discussions will have huge implications in a remarkably short time.”

The keynote speaker was Stephanie Devaney, Ph.D., deputy director of the All of Us Research Program at the NIH. In her keynote address, she educated the attendees about the new precision medicine research initiative and spoke about its goal to enroll 1 million volunteers.

“It is our charge to develop a resource for any or all diseases. Data from the program will be broadly accessible to empower research.” In addition, Devaney shared how the program will be a catalyst for research innovations including for ELSI.

“We have a number of ELSI priorities,” said Devaney. The All of Us Research Program hopes to promote health equity, learn more by working with special populations, and evaluate the impact of its activities she shared.

UConn Health was excited to co-host the 2017 ELSI Congress since it specializes in advancing genomic research, along with JAX.

“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.”

The ELSI Congress was funded by NHGRI through a grant to Columbia University Medical Center.