Kaiser Seeks Genetic Data In Effort to Build Database

Kaiser Seeks Genetic Data In Effort to Build Database

By Rhonda L. Rundle
Feb 15, 2007

In a first step toward creation of an enormous bank of genetic information, Kaiser Permanente's research division this week began soliciting participation of two million of the health-maintenance organization's adult members in Northern California. Kaiser said the database will be a "groundbreaking" resource for world-wide study of common diseases and their causes.

The nonprofit organization, based in Oakland, is comparing the effort with the U.K. Biobank, launched last year, and to an Iceland gene bank of about 275,000 people. Kaiser says it hopes to eventually recruit about 500,000 of its HMO members to voluntarily provide blood or saliva samples containing their personal genetic information.

The databank will be available to researchers at Kaiser -- as well as outside collaborators -- to study the links between genes, environmental factors and disease. The research will build on the federally funded Human Genome Project, which provided a map of human genes four years ago. But the blueprint by itself doesn't help physicians understand the causes of disease. That work is being done now in academic, government and industry laboratories around the world.

"There has been a gradual recognition among organizations like Kaiser that the time has come to mount a really significant research study of this sort," said Francis Collins, director of the National Human Genome Research Institute. Kaiser's initiative is one of the largest in the U.S., but other clinics are also obtaining consents from their patients, he said. "The main factors that have prevented us from moving into this is we don't know if the public is comfortable with it and to find the funds to support the large amount of experimental work that must be done."

One thrust of the Kaiser program will be to study the interaction between drugs and disease so that treatments can be targeted to patients who will respond to them. Personalized medicine will show the way to treating "the right person, right disease, right drug and right dose," said David Kessler, former commissioner of the U.S. Food and Drug Administration and now dean of the University of California at San Francisco School of Medicine. UCSF is collaborating with Kaiser on the research program.

The proposed Kaiser databank is particularly attractive to researchers because of the ethnic and socioeconomic diversity of the HMO's Northern California members. Also, the HMO has medical records dating back decades on many of its members. "Kaiser has many members who are young, elderly, African-American, Latino and Asian, so we will be able to know when our findings apply to certain groups and not others," said Neil Risch, director of UCSF's Institute for Human Genetics and co-investigator on the research program.

Kaiser emphasized that participation in the databank would be voluntary to its members and that the privacy of their genetic information would be protected. Any information that might be shared with outside collaborators would first be "de-identified," said Cathy Schaefer, director of the program and a research scientist at the Kaiser Permanente Division of Research.