The new center, funded by a $7.1 million award from the National Human Genome Research Institute, will collect and share research on the ethical, legal and social implications of genomics.
August 19, 2019 - By Patricia Hannon
The Stanford Center for Biomedical Ethics has been chosen by the National Human Genome Research Institute to help develop a coordinating hub for information on the ethical, legal and social implications of genetic research.
The new Center for ELSI Resources and Analysis is being funded with a $7.1 million award, the institute announced Aug. 14. ELSI is an abbreviation for the ethical, legal and social implications of genomics.
The effort will be led by Mildred Cho, PhD, associate director of the Stanford biomedical ethics center, and Sandra Soo-Jin Lee, PhD, chief of the Division of Ethics and faculty in Columbia University’s Department of Medical Humanities and Ethics. The Hastings Center, a bioethics research organization, and Harvard University, which houses the Personal Genetics Education Project, will collaborate on the new center.
Cho said the mission of the ELSI center is to build a community around conducting, sharing and using ELSI research, and to make that collection of material accessible and understandable to experts and the public.
Almost 30 years after the launch of the International Human Genome Project, which aimed to map the human genome, many ethical and legal concerns still surround genetic research, Cho noted. Yet there’s no central repository where people grappling with such issues can easily find ethical or policy guidance, or published research, or connect with experts who can help guide them.
“I think it should be easier for people who are writing legislation that has to do with consumer genetic testing, or the release of data from Ancestry.com, to be able to find experts who are knowledgeable about the implications of data collection by genomic companies,” said Cho, professor of pediatrics and of medicine.
Filling a void
The center is poised to fill that void with a new web portal for ELSI content that will be identified, collected and shared. Cho expects that content to come from such sources as scientific and academic research, news stories and commentary, scientific journals, laws and legal briefings.
Through such data collection, the center’s leaders hope to gain a better understanding of gaps in knowledge and to communicate those gaps to researchers. They also hope to help influence scientific investigation by facilitating collaborations between researchers and by holding a separately funded biennial congress to bring them together.
But central to center’s aim is to share ELSI knowledge with people who might not be aware it’s available, and to tailor the information for specific stakeholders — policymakers, medical professionals, journalists, teachers, the general public and even scientists themselves. This is important, Cho said, because ELSI content draws from a number of disciplines, including philosophy, sociology, psychiatry, economics and politics.
“We’re going to try to develop new methods for synthesizing different kinds of knowledge that typically aren’t combined,” Cho said.
The center’s collaborators bring a wealth of expertise to the project, with much of the team’s work being conducted virtually, rather than at a single location. Lee, a former senior research scholar at Stanford’s Center for Biomedical Ethics, and other Columbia faculty members who specialize in ethics, genetics and biomedical informatics will work at their campus to build the ELSI community. They also will partner with Columbia’s Graduate School of Journalism to assess how journalists might use the portal, and what tools and information they would find useful in their reporting.
Other Stanford researchers will contribute to the project, including David Magnus, PhD, director of the biomedical ethics center and the Thomas A. Raffin Professor of Medicine and Biomedical Ethics. In addition, researchers from UC-San Diego and Case Western University will be involved.
Cho said a number of new people also will be brought in to work on the Stanford campus in various roles, including to build the web portal and develop the backbone of its technology, website and database.
“We have the opportunity to have our fingers on the pulse of ELSI research and understand where the field is going and where it needs to go,” Cho said.
Cho also leads the Center for Integration of Research on Genetics and Ethics at Stanford. It was established in 2004 as one of several Human Genome Research Institute’s Centers for Excellence in ELSI research and is based at Stanford’s Center for Biomedical Ethics.
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