New conference aims to improve understanding of how advances in genomics influence society

Columbia University Medical CenterMay 5 2017

From prenatal genetic screening to the genetic testing of women with family histories of breast cancer, genomics is rapidly becoming a fixture in our lives. The National Human Genome Research Institute (NHGRI) has, since its founding, sponsored research into the ethical, legal and social implications (ELSI) of genomics to understand the profound societal and personal effects of technological advances in genomics.

Genomics and Society: Expanding the ELSI Universe, a three-day conference on the myriad issues that spring from the ethical, legal and social implications of genomic research, will be hosted on June 5 - 7, 2017 by The Jackson Laboratory for Genomic Medicine and UConn Health in Farmington, Connecticut. The conference is funded by NHGRI through a grant to Columbia University Medical Center (CUMC).

The latest research on ELSI topics will be presented by physicians, geneticists, genetic counselors, social scientists and lawyers, in academia, government and industry from around the world. From renowned researchers at the top of their fields to students and early career scientists bringing new insight and perspectives, the depth and range of expertise at the conference promise fascinating debates over new and emerging data.

Keynote speaker Eric Dishman, director of the National Institutes of Health (NIH) Precision Medicine Initiative's All of Us Research Program will kick off the meeting with a discussion of the need for continuous innovation to address the quickly evolving genomic landscape. Other featured speakers include:

• Pearl O'Rourke from Harvard Medical School on the ethical, legal and social implications of the All of Us initiative;
• James Evans, Professor of Genomics and Medicine at the University of North Carolina on the ethics of genomic medicine in the clinical setting;
• Alondra Nelson, Dean of Social Science at Columbia University on genes, ancestry and identity;
• Wylie Burke, Professor of Bioethics and Humanities at the University of Washington on the rapid reinvention of ELSI in our evolving healthcare world.

The full program presents new research in more than 150 expert panel discussions, individual paper and poster presentations, and workshops on topics ranging from the implications of genetic testing in the criminal justice system to the uses and potential misuses of CRISPR - the very latest in genetic manipulation.

"We are honored to play a part in bringing together world-renowned experts to discuss the most pressing issues at the crossroads of genomics and ethics," says Dr. Charles Lee, Scientific Director of The Jackson Laboratory for Genomic Medicine. "As our society rapidly embraces precision medicine, we have an obligation to provide both ethical and scientific guidance to researchers in the lab, clinicians on the frontlines, and patients making important decisions about their health."

"As our society rapidly embraces precision medicine, we have an obligation to provide both ethical and scientific guidance to researchers in the lab, clinicians on the frontlines, and patients making important decisions about their health."

"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," says 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."

"NHGRI has been the major funder of ELSI research since the beginning of the Human Genome Project," said Lawrence Brody, Ph.D., NHGRI's Director of the Division of Genomics and Society. "Our aim is to support research that anticipates and addresses the societal impact of genomic science.

"NHGRI has also played a major role in bringing the results of ELSI research into the public forum," noted Dr. Paul Appelbaum, professor at CUMC and director of the Columbia University Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic and Behavioral Genetics. "As genomic technology expands by leaps and bounds, new ethical issues of consent, of commercialization, of justice and access to genomic medicine confound scientists and the public alike. ELSI research is seeking evidence-based answers to these novel questions. This conference aims to share the latest ELSI research as widely as possible."