Kaiser Permanente launches long term project to collect genetic data

Feb 19 2007

California-based HMO Kaiser Permanente on Wednesday announced the creation of a decades-long research project that will collect and analyze genetic information from hundreds of thousands of adult members, the San Jose Mercury News reports.

Kaiser Permanente has sent surveys to two million members in Northern California asking about their medical history, exercise and eating habits. Researchers expect about 500,000 members to participate (Feder Ostrov, San Jose Mercury News, 2/15). Kaiser Permanente plans to begin a second phase of the project in 2008, when it will ask members to donate genetic material through cheek or blood samples. Researchers then will combine their collected information with Kaiser Permanente's "massive medical history records in a database that [they] can use to gain a deeper understanding of disease causes and develop treatments," the AP/Houston Chronicle reports (Elias, AP/Houston Chronicle, 2/14). Conditions likely to be targeted by the project -- called the Research Program on Genes, Environment and Health -- include cancer, heart disease, Alzheimer's disease, asthma, diabetes and reproductive problems (Peyton Dahlberg, Sacramento Bee, 2/15). Similar studies are "planned or are under way in Great Britain, Iceland, Japan and Estonia, but the Kaiser membership study appears to stand out both for its size and ethnic diversity in the United States," the San Francisco Chronicle reports (Hall, San Francisco Chronicle, 2/15). Participation will be voluntary, and the privacy of genetic information will be protected, according to Kaiser Permanente (Rundle, Wall Street Journal, 2/15). The project will not include research on gene therapy, cloning, stem cell research or testing for specific genetic problems, according to Catherine Schaefer, the project's co-director. The project's initial $7 million in funding has been provided by Kaiser Permanente, the Wayne and Gladys Valley Foundation and the Ellison Medical Foundation. The project "is expected to receive more federal government and foundation grants," the Mercury News reports.

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"[W]ith very few exceptions, we don't know anything about which genes and which environmental factors influence the occurrence of these diseases or responses to their medications," Schaefer said. "We have grand visions of what this [genetic] information can be used for, but the reality is that we need to make the connection," she added (San Jose Mercury News, 2/15). Schaefer said, "We now have the ability for the first time to look across the human genome. We're on the cusp of understanding new pathways. It's sort of a journey to the center of biology" (San Francisco Chronicle, 2/15). Neil Risch, co-director of the project and a genetics scientist at the University of California-San Francisco, said the Kaiser Permanente research has advantages over similar projects, including the diversity of the Northern California population and the decades of medical information that the HMO already maintains. Risch said, "This program is not just about genes. We also have a clear understanding that nothing in this life is entirely genetic and that environment plays a role in disease" (AP/Houston Chronicle, 2/14). Risch said that members will be notified when their genetic information indicates that they need medical attention (San Jose Mercury News, 2/15). David Kessler, dean of the UCSF School of Medicine, said, "This is not some esoteric genetic research," adding that the project will help develop a model of targeting medicines at specific genetic profiles (San Francisco Chronicle, 2/15). Some experts "wondered whether enough Kaiser members trust the HMO to participate in the survey," the AP/Chronicle reports. Francis Collins, director of the National Human Genome Research Institute, said, "That's an open question" (AP/Houston Chronicle, 2/14). Collins 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" (Wall Street Journal, 2/15).Please note: The Kaiser Family Foundation is not associated with Kaiser Permanente or Kaiser Industries.