By Kristen Bole | UCSF.edu | November 14, 2013
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.
Barbara Koenig, PhD
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?”
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.