The latest in a series of major conferences for ELSI researchers and others interested in the ethical, legal, and social implications of genomic research.
Previous ELSI Congresses:
- University of North Carolina, Chapel Hill, NC • April 2011
- Case Western University, Cleveland, OH • May 2008
- National Institutes of Health, Bethesda, MD • January 2001
Program Contact: Rachel Yarmolinsky
Videos from the conference:
– Stephanie Devaney, Keynote Speaker, Deputy Director, NIH All of Us (Precision Medicine Initiative) Program
– Pearl O’Rourke, Director of Human Research Affairs at Partners HealthCare Systems in Boston, Associate Professor of Pediatrics, Harvard Medical School
– Wylie Burke, Professor, Department of Bioethics and Humanities, University of Washington
– James Evans, University of North Carolina
– Pearl O’Rourke, Harvard Medical School
– Wylie Burke, University of Washington
– Paul Appelbaum, Columbia University (Moderator)
About the Conference:
Nearly 300 people attended the three-day Congress on the Ethical, Legal, and Social Implications (ELSI) of genomics research. The fourth such meeting, entitled Genomics and Society: Expanding the ELSI Universe, was funded by NHGRI through a grant to Columbia University Medical Center, and held on the campus of UConn Health and The Jackson Laboratory for Genomic Medicine in Farmington, CT. This ELSI Congress, traditionally occurring every few years, assembles researchers to discuss societal issues emanating from advances in genomics research. Given the recent beta launch of NIH’s All of Us Research Program in June, many discussions centered on important ELSI research opportunities with this new program. All of Us is the government-funded Precision Medicine Initiative aiming to enable research on a wide range of diseases and further our understanding of healthy states by enrolling and studying one million research participants.
To that end, the keynote address, given by Stephanie Devaney, Ph.D. (Deputy Director of the All of Us Research Program), detailed the initiative. Following her talk was a response by P. Pearl O’Rourke, M.D. (Director of Human Research Affairs at Partners HealthCare) that raised important ELSI issues associated with the All of Us program – the kick-off to fruitful discussions for the remainder of the conference.
The many talks, poster presentations, and panel discussions held over the three days covered a range of relevant issues. For instance, how genomics may or may not address health disparities and what other factors contribute to people’s health, including access to basic healthcare; issues concerning return of genomic information and informed consent; and, control over access to genomic information and privacy.
There were also talks discussing important issues unrelated to precision medicine. These included presentations on direct-to-consumer genetic testing and third-party tools available on the Internet to help people understand their genomic information; DNA and the law, including its use in the criminal justice system; genetic testing in adoption; and ELSI issues in human microbiome research.
Particularly relevant to NHGRI was a session on embedded ELSI research projects. Over the past decade, NHGRI’s ELSI Research Program has embraced a model where projects are embedded in larger programs, such as the Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network. For these programs, each site within the network has complementary ELSI studies integrated into parent projects (e.g., on genomic discovery or variant interpretation). For instance, an ELSI research project could identify best practices for informed consent in genomic medicine by taking advantage of the large number of research participants being enrolled in the overarching program.
However, this embedded approach to ELSI research raises important questions. For example, how might the direct incorporation of ELSI research projects into parent studies affect the design or the results of the parent studies or the ELSI studies? Is the consent process more difficult than it needs to be? What are the right issues to address through an embedded project model in order to acquire data from real-life scenarios? In reality, the answers to these and other related research questions are being developed both through embedded ELSI research projects in programs like CSER and eMERGE as well as through NHGRI’s Centers of Excellence in ELSI Research (CEER).
While many issues were discussed throughout the three days of the meeting, two conclusions were overwhelmingly evident: (1) genomics is moving at a rapid pace; and (2) while pursuing research advances at this pace is essential for better understanding health and disease, we need to consider the societal and ethical implications that go along with them. The ELSI research community must continue to anticipate the directions that the field of genomics is moving in and the speed at which this is happening. And to NHGRI’s part, the ELSI research projects and community gatherings funded by the Institute aim to establish how to capitalize on new discoveries in genomics and genomic medicine in a way that is most efficient, least disruptive, and beneficial to all populations and individuals.
( from the NHGRI Aug 1, 2017 Newsletter)
The Jackson Laboratory for Genomic Medicine and UConn Health, 10 Discovery Drive
Farmington, CT USA 06032