Researchers aim to reveal the genetic and environmental causes behind deadly and disabling diseases
Oakland, Calif. (Feb. 14, 2007)—The Kaiser Permanente Northern California Division of Research is launching one of the largest research projects in the United States to examine the genetic and environmental factors that influence common diseases such as heart disease, cancer, diabetes, high blood pressure, Alzheimer’s disease, asthma and many others.
The goal of the Kaiser Permanente Research Program on Genes, Environment and Health (RPGEH) is to discover which genes and environmental factors—the air we breathe, the water we drink, as well as lifestyles and habits—are linked to specific diseases.
Researchers hope to explain how genes and environmental factors work together to influence the risk of getting a disease or affect its severity or outcome, according to program co-investigators Cathy Schaefer, PhD, director of the RPGEH and a research scientist at the Kaiser Permanente Division of Research in Oakland, and Neil Risch, PhD, director of the UCSF Institute for Human Genetics and an adjunct investigator at Kaiser Permanente. The Research Program will also include studies of genetic and non-genetic factors that affect how people respond to specific medications, including the occurrence of side effects.
Almost all common diseases and health conditions are linked both to genetic and environmental factors, according to the researchers. “Understanding the critical interaction between genes and the environment on health will have an important impact on the way all of us look at health and disease in the future,” said Schaefer. “For instance, our research could help us identify not only what diseases a person may be at risk for, but also identify how to reduce that risk, or how best to treat the disease. This research program provides an exciting opportunity to make significant progress toward improvements in health and medical care.”
Member participation is critical to the success of the RPGEH. With that in mind, Kaiser Permanente is inviting members to participate in a survey that will be the first step in building the research program. Approximately 2 million adult members in Northern California will receive a survey by mail, asking questions about their background, health history, lifestyle and habits, and their family’s medical history. Later, researchers will invite members to give a biological sample in the form of blood or saliva that can be used to obtain genetic information. Before any research involving genetic information can occur, the RPGEH will obtain informed, written consent from Kaiser Permanente members.
By combining the genetic, health, and survey information from hundreds of thousands of members into databases, researchers hope to gain a deeper understanding of what combinations of genes and environmental factors influence the risk of complex diseases.
The success of RPGEH hinges on having a high number of Kaiser Permanente participants, with good representation of all groups in the population. Large groups provide the statistical power that is necessary to detect the subtle and complex relationships between genes, environmental factors and disease. “Because the population we hope to include in this program is so large and diverse, the research can be generalized,” explained Schaefer.
With RPGEH, Kaiser Permanente is contributing to public health by taking the work of the human genome project—describing the sequence of genetic information in great detail—to the next step of translating that information into an understanding of how genes influence our health. Kaiser Permanente has a diverse membership and 46 years of research experience, making it uniquely qualified to lead this kind of large-scale, long-term research that could personalize medicine for millions of individuals.
“In the world of medicine today, one way a physician determines a patient’s risk for a serious condition like heart disease is by taking a family history,” said Joe Selby, MD, MPH, director of the Division of Research. “However, the Research Program on Genes, Environment and Health will hopefully give us information that is far more useful and will enable the medical community to be much more precise in pinpointing the causes of disease and tailoring treatment for the individual.”
Cutting edge studies such as the RPGEH that include large numbers of people are not unprecedented. The Framingham Heart Study, The Women’s Health Initiative (WHI) and the Nurses Health Study (NHS) are just a few examples of large-scale research projects that have helped us understand a great deal about prevalent health conditions. Kaiser Permanente’s Division of Research is a bellwether in high-profile research that has led to significant health care findings through use of its research database. For example, a Kaiser Permanente/FDA study on the painkiller Vioxx revealed an increased risk of cardiovascular events for those taking the drug.
To ensure that the RPGEH meets the highest scientific standards, as well as addresses issues of potential concern to different communities, the Division of Research has set up both a scientific advisory panel—consisting of non-Kaiser Permanente individuals with relevant scientific and professional credentials—and a community advisory panel with leaders from diverse communities throughout Northern California. These panels will advise and guide all aspects of the Research Program. All data collection and research by the RPGEH has been and will be reviewed and overseen by the Kaiser Permanente Institutional Review Board (IRB) for the Protection of Human Subjects. This federally mandated Board includes physicians, lawyers, and community members who are not involved in the Research Program.
Participation in the RPGEH is completely voluntary. An individual’s genetic information will not be used in genetic studies without their written consent. Moreover, as with all studies carried out by the Division of Research, protecting the confidentiality and security of our members’ information is our first priority. Kaiser Permanente has a long track record of protecting the security and confidentiality of information provided by research participants. The KP Division of Research maintains separate information and databases from the health plan and members’ medical records. No research data is stored with identifying information. In the database, each participant will be given a unique code that will replace their medical record number, name and other identifying information. The code can only be linked back to identifying information by a small number of Division of Research staff members who must have a special password. The data is for research only.
Studies done by the Division of Research are funded almost entirely with money from outside Kaiser Permanente in the form of federal grants, such as those from the National Institutes of Health, or from other organizations and foundations. Funding for the RPGEH comes from the Wayne and Gladys Valley Foundation, the Ellison Medical Foundation, and Kaiser Permanente’s Community Benefit Program. For more information on the Kaiser Permanente Research Program on Genes, Environment and Health, go to www.dor.kaiser.org.
The Kaiser Permanente Division of Research conducts, publishes, and disseminates epidemiologic and health services research to improve the health and medical care of Kaiser Permanente members and the 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 400-plus staff is working on more than 250 epidemiological and health services research projects.
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