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Hastings Center News

New Project to Expand Research Hub on Ethical, Legal, and Social Implications of Advances in Human Genomics

The Stanford Center for Biomedical Ethics and the Columbia Division of Ethics will lead a five-year expansion of their hub for research on the ethical, legal, and social implications (ELSI) of human genomics, in collaboration with The Hastings Center and Case Western Reserve University, along with multiple partner organizations.

The hub—the Center for ELSI Resources and Analysis (CERA)–is funded by the National Human Genome Research Institute.

“The mission of the CERA is to build a community to contribute to the production of knowledge about the ethical, legal, and social implications of genomics and utilize both relationships and technology to make it accessible and understandable to users, including experts and members of the public,” said Mildred Cho, who is leading the effort with Sandra Soo-Jin Lee.

Dr. Cho is associate director of the Stanford Center for Biomedical Ethics and Dr. Lee is chief of the Division of Ethics and professor of medical humanities and ethics at Columbia University. Hastings Center senior research scholar Josephine Johnston is a co-investigator. All three are Hastings Center fellows.

A centerpiece of the project is the ELSIhub.org online knowledge portal, which facilitates the use of ELSI research findings. The site will be outfitted with new tools to enable global, online discussions between scholars in ethics, social science, public health, and law and other stakeholders, during this phase of the project. The team will also be testing the responsible use of large language models for research synthesis that will aid human curators in the production of summarized ELSI research for a wide variety of audiences and use cases.

A Critical Need

“We’re at a pivotal moment where decades of genomics research are being translated into real-world applications, with profound implications for individuals, communities, and society,” said Dr. Lee. “Genomic medicine is becoming a reality, but concerns remain about bias and equitable access, even though these technologies have their roots in publicly funded science. To address these challenges and other emerging high-priority ELSI questions, the CERA convenes scholars, scientists, communities, patients, policymakers, and other stakeholders to engage in ELSI research, scientific practice, and policymaking.”

Other important ELSI issues are on the immediate agenda. “Because we have seen a massive reduction in the cost of genome sequencing and the advent of CRISPR gene editing,” said Johnston, “much more is possible. We are seeing the use of gene editing for patients with sickle cell disease, and anticipating germline use, which would create heritable changes to human biology. Scientists, patients, health care providers, and policymakers worldwide need research and expertise on ethical issues in genomics, like equity and access, as well as guidance on regulation.”

The production and dissemination of ELSI scholarship on these and other critical issues facing us in the coming years are central CERA functions.

Engaging diverse communities

In its next phase, CERA will develop programming to engage diverse communities to integrate ELSI with genome research. This includes facilitating networking to help build research teams that include legal, social science, humanistic, and community perspectives at all phases of the translational pipeline. Their efforts will focus in particular on the inclusion of communities underserved by and underrepresented in genome research and genome scientists themselves.