Columbia Division of Ethics to Co-lead $9.4M Genomic Ethics Initiative

The Division of Ethics at Columbia University has been funded by the National Human Genome Research Institute (NHGRI) to co-lead a five-year expansion of their Center for the Ethical, Legal, and Social Implications (ELSI) in Human Genomics Resources and Analysis (CERA). The Division of Ethics, in the Department of Medical Humanities and Ethics at Columbia University, was the co-recipient of a $9.4 million grant following a competitive renewal process. 

The effort will be led by Sandra Soo-Jin Lee, PhD, Chief of the Division of Ethics and Professor of Medical Humanities and Ethics at Columbia University, and Mildred Cho, PhD, Associate Director of the Stanford Center for Biomedical Ethics, in collaboration with The Hastings Center, a bioethics research institute, and Case Western Reserve University, along with multiple partner organizations.

"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 Professor 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."

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.

“There are gaps in the evidence base that impact the universal utility of clinical genetics,” said Maya Sabatello, LLB, PhD, a CERA co-investigator and associate professor at the Columbia Division of Ethics. “This problem will need to be addressed by engaging communities that have been excluded from research and have well-founded concerns about participating in it,” she said.

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.