Scientists will use the repository—known as a “biobank”—as part of a comprehensive research initiative to conduct groundbreaking work to establish the genetic and environmental factors that influence common diseases such as heart disease, cancer, diabetes, high blood pressure, Alzheimer’s and asthma, among others.
The grant will help Kaiser Permanente’s Northern California Division of Research to gather, store and protect the biobank’s first 200,000 samples of DNA, and build a secure database with relevant health and environmental information. The goal of the Robert Wood Johnson Foundation and Kaiser Permanente is to expand the biobank to 500,000 samples by 2012, offering a population-based database with enough statistical power to identify even subtle effects of environmental and genetic factors in less common health conditions such as mental health disorders or autoimmune diseases.
Researchers also will make use of detailed environmental information on air quality, exposure to toxins and even aspects of the social and built environment, such as neighborhoods that lack sidewalks or safe parks. Grant funding also is being used to develop the policies and procedures that will enable this unique database to be accessible to researchers worldwide.
“The more we know about the causes of disease, the greater our ability to provide more effective treatment and, ultimately to prevent disease from occurring,” says Catherine Schaefer, Ph.D., director of Kaiser Permanente’s Research Program on Genes, Environment and Health (RPGEH) which encompasses the biobank. The Kaiser Permanente RPGEH will develop and maintain the data repository.
Research findings from the database might be used to tailor medication to an individual patient and prescribe lifestyle changes that could prevent life-threatening diseases, Schaefer added. It also could help researchers conduct population-based studies designed to better understand genetic and nongenetic factors that affect the severity or recurrence of common diseases, such as cancer or diabetes. Such studies will make excellent use of the database’s longitudinal electronic medical records, and can help tailor tests and treatments to reduce disease severity and recurrence.
Projects slated to start using the database in 2009 include:
A large study of prostate cancer in African-American men. The study hopes to uncover genetic and nongenetic factors that put African-American men at higher risk for prostate cancer.
A large study of bipolar disorder, a mental illness that can increase the risk of suicide. Researchers know the disorder runs in families and hope to find specific genes and other factors that determine people’s susceptibility.
“The unequaled size and power of this biorepository will drive research that can dramatically improve the health and health care of millions of Americans,” says Risa Lavizzo-Mourey, M.D., M.B.A., president and CEO of the Robert Wood Johnson Foundation. “We are proud to help establish this as a premier resource for the nation that can significantly advance medical knowledge and treatments.”
Kenneth Olden, Ph.D., Sc.D., L.H.D., founding dean of the School of Public Health, Hunter College, City University of New York and former director of the National Institute of Environmental Health Sciences, says that the RPGEH database is one of the first to include environmental and genetic information collected from a broad array of populations, representative of the nation’s diversity.
“The diversity of the database makes it a unique resource,” Olden says. “The findings from studies in this program can be readily applied to the population in the United States.”
Some critics of biobanks have expressed concern that if genetic information became public it could lead to discrimination and other negative consequences. A new federal law prohibits discrimination based on genetic factors, and the new repository will have additional layers of protection built in to protect the privacy and security of participants’ genetic and health information. All biorepository data and DNA samples are de-identified and stored in secure locations with limited authorized access. Biorepository data including genetic information will not be entered into electronic medical records for individual patients. Comprehensive procedures will protect privacy and researchers must go through a rigorous approval process in order to use the database.
Schaefer directs RPGEH along with Neil J. Risch, Ph.D., a renowned statistical geneticist and director of the University of California San Francisco Institute for Human Genetics. The biobank project is based in the 3.3-million member Kaiser Permanente Medical Care Plan in Northern California. More information about the data repository and Kaiser Permanente’s RPGEH can be found at http://www.dor.kaiser.org/studies/rpgeh.
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