The Stanford Center for Biomedical Ethics (SCBE) has received $9.4 million in funding for a five-year expansion of the Center for Ethical, Legal and Social Implications (ELSI) and Center for Resources and Analysis (CERA). The grant, given by the National Human Genome Research Institute, will help pay for an initiative in collaboration with Columbia University, the Hastings Center and Case Western Reserve University.
SCBE investigates clinical and research ethics through an interdisciplinary framework, partnering with scholars across departments at Stanford spanning epidemiology, philosophy, anthropology and law.
The center works on AI technologies, rare and undiagnosed diseases, genetics and education research, ethical issues in healthcare and health practice, Holly Tabo Ph.D. '02, the director of SCBE and professor of medicine, said in an interview with The Daily. According to David Magnus Ph.D. '93, professor of medicine and biomedical ethics and former director of SCBE from 2003 to 2024, those ethical issues include, but aren't limited to patient discrimination, brain death, organ procurement and the legal determination of death.
SCBE also works on outreach into the community. For example, Magnus said the bioethics field largely influences social views through media work and public policy. Tabor said these projects bring an "excitement" and "richness" in dialogues within the center and the school of medicine, which she loves.
Bioethics is not a historically well-funded field, Magnus said. Since its founding in 1989, SCBE has seen significant growth in its role at the University.
"We didn't get a lot of grant funding when I first came to Stanford [in 2003] and we were not a major player in bioethics," Magnus said.
Over the past two decades, SCBE has been the first cohort to have a Center for Excellence in ELSI research and to receive a T32 training grant, Magnus said. Now, SCBE is a top bioethics center and the coordinating center for ELSI research at the National Human Genome Research Institute.
Currently, SCBE hosts annual events including the SCBE seminar series and Jonathan J. King lecture series. SCBE also hosts Stanford Medicine's Medicine & the Muse Program and CERA. Affiliates of SCBE also teach at the medical and undergraduate schools.
CERA is co-lead by Mildred Cho Ph.D. '92, and is an international resource "building a community of people all around the world who have interests in ethical, legal and social implications of genetics."
Her CERA co-chair is Sandra Lee '88, former human biology major at Stanford and current chief of the division of ethics and professor of medical humanities and ethics at Columbia University.
In describing the two universities' collaboration, Lee highlighted the goal for multidisciplinary discourse.
"The Stanford and Columbia teams work together to create opportunities for multidisciplinary dialogue among ELSI researchers, genome scientists, clinical care providers such as genetic counselors and policy makers together to discuss high priority, emerging ethical, legal and social issues related to genetics and genomics," Lee wrote to The Daily.
Much of this is showcased in ELSI Friday Forums and ELSIconversations, along with special issues in leading bioethics journals. In these platforms, CERA offers a range of recorded speaker events, educational curricula and literature collections. CERA also collects research tools and a database of ELSI scholars worldwide, for example through Traineehub.
This year, Lee said the center is hoping to launch an ELSI Journal Club and ELSIconnect discussion board. Long-term goals over the next five years include reaching out more to other constituents and addressing the needs of people who are doing genetic research, Cho said. Another aim is to expand CERA's utility internationally.
"A lot of bioethics and ELSI are initiated in the United States, but really all of these issues are international," Cho said, particularly noting the lack of diversity in research samples.
One area of interest for CERA has been addressing the ethics related to indigenous genomics, which raises ethics, policy and governance concerns. Many marginalized populations not only don't trust scientists from the dominant cultures, but also "have a reality that they live in which is basically guaranteeing that they're not going to benefit from medical research," Cho said. "It's hard to close that gap and make an argument that they should give samples to global research."
To address this concern, Cho hopes for CERA to foster discussions around "how to bring benefits back to people who have donated their samples." These could be "in the form of a financial benefit, or access to health care that they didn't have before, or access to research equipment or a school," Cho said.
"Something that will actually physically and tangibly benefit in the short term, as opposed to pushing it off to some vague future that may never happen," Cho said.
In addition to inequity, recent advances in artificial intelligence (AI) technologies have become another increasingly relevant concern for bioethics.
For one, AI has highlighted the lack of diversity in medical data, specifically in underrepresented groups.
"Information can be not only inaccurate, but actually harmful," representing a "cross cutting issue that faces all forms of medical research," Cho said.
Magnus outlined the structures at play.
"People of different socioeconomic conditions and racial ethnic groups are going to have different levels of health prediction," Magnus said. "Even if you can get rid of bias, there's the reality of social determinants of health, which could lead to reinforcement and reification of discrimination."
Tabor urges the need for increasing ethical input on the expansion of AI. To be impactful, "ethics needs to be in close partnership with people who are conducting research, translating research into clinical care and making policy in society," Tabor said.
To keep up with ever-evolving technologies, "we have to not just answer the question that was the question a year ago, but make sure we're aware of what the questions are today," Tabor said. "We need to be very proactive about our engagement to try to anticipate those challenges earlier rather than later."