New Center Explores Ethical, Legal, Social Implications of Genomics in Health Care

With inexpensive genetics kits flooding the market, both consumers – and their doctors – still lack basic information about what to do, if anything, with what they learn about their own genomes.

“In the future, there is the belief that everyone will have their genome sequenced and that information will be used to guide medical care,” said Carol P. Somkin, PhD, research scientist with the Kaiser Permanente Division of Research.

“How do we take basic scientific findings, like mapping of the human genome, and transform them into applications that can help us better understand the causes of disease, their prevention and treatment?” added Barbara Koenig, PhD, professor of medical anthropology and bioethics in the UCSF School of Nursing.

Somkin and Koenig are co-directors of the new Center for Transdisciplinary ELSI Research in Translational Genomics (known as CT2G), a three-year program that will explore the ethical, legal and social implications (ELSI) of genomics in health care. 

The National Human Genome Research Institute provided $778,000 for the new center, a joint project of Kaiser Permanente, UC San Francisco and UC Hastings College of Law. The broad, multidisciplinary effort seeks to begin answering the thorny questions about how genomic information will be used – before this scientific revolution enters the clinic.

“A decade after the human genome was fully mapped, figuring out how to translate genomic findings into prevention and clinical care has become a public health priority,” Koenig said.

“These new genomic discoveries raise complex ethical and social issues,” said Julie N. Harris-Wai, PhD, MPH, staff scientist of the Kaiser Permanente Division of Research and associate director of the new center. “For example, when genome sequencing reveals unexpected information about a patient or their family, should it be revealed?”

Emerging Field of Precision Medicine

The ability to map entire genomes at low cost is fostering the emerging field of “precision medicine,” which aims to tap the wealth of information in genomics and link it to health and disease across the globe, enabling not just personalized care for one individual, but more precise and predictive care worldwide.

Pharmacogenetics, for example, could allow the targeting of specific cancer treatments to the people who will most benefit from them, or prevent rare reactions to certain medications.

Kaiser Permenente and UCSF are uniquely positioned for leadership in translational genomics. Since 2008, they have collaborated on the Research Program on Genes, Environment, and Health (RPGEH), a biobank of more than 200,000 genetic samples from Kaiser Permanente Northern California members that is fostering numerous epidemiological studies of genetic and environmental influences on health and disease.

UCSF is a national leader in the emerging field of precision medicine, with internationally recognized training resources for clinicians, genetics researchers and social scientists; top schools of both medicine and pharmacy; and strong ties with UC Hastings College of the Law. 

With its integrated health-care delivery system, extensive electronic health records and well-established researchers, Kaiser Permanente is a “wonderful laboratory for how genomics can be used to make good recommendations and improve clinical care,” Harris said.

However, best practices and guidelines are needed. “We hope that the discussions we have now will influence how Kaiser Permanente manages genetic issues in the future,” Somkin said.

The center will foster cooperation among a broad range of stakeholders, including scholars, scientists, policymakers and clinicians from multiple fields and specialties. “We have to be able to work across many disciplines to get something that’s useful to individuals,” Harris-Wai said. “We will identify target areas and work collectively to come up with guidelines and advice for translating genomics information into clinical care.”

In addition, the new center will also plan how to educate the next generation of clinicians and scientists about the ethical, social, and legal issues in genomics.

 “We’ll be looking at how to make sure that access to genetic testing is equitable and genetic information is used fairly,” Somkin said.

Privacy issues are also paramount. “It is critical to figure out how to protect all this detailed genetic data that needs to be stored.” Koenig said. “There are many issues around genomics research that require careful attention.”

CT2G will be hosting a series of seminars for Kaiser Permanente, UCSF and UC Hastings College of Law faculty and students. The highlight of the center’s first year will be a series of public lectures given by Professor Wylie Burke, who has been named the 2013-14 UCSF Presidential Chair. See the center's website for more information.

About the Kaiser Permanente Division of Research

The Kaiser Permanente Division of Research (DOR) conducts, publishes and disseminates epidemiologic and health services research to improve the health and medical care of Kaiser Permanente members and society at large. It seeks to understand the determinants of illness and well-being, and to improve the quality and cost-effectiveness of health care. Currently, DOR’s 550-plus staff is working on more than 250 epidemiological and health services research projects. For more information, visit www.dor.kaiser.org or follow us @KPDOR.

About UC San Francisco

UC San Francisco is the leading university exclusively focused on health. It is dedicated to transforming health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. UCSF includes premier graduate schools of dentistry, medicine, nursing and pharmacy, a graduate division with world-renowned programs in the biological sciences, a preeminent biomedical research enterprise and two top-ranked hospitals, UCSF Medical Center and UCSF Benioff Children’s Hospital.