PRINCETON, N.J.--The Robert Wood Johnson Foundation, through its Pioneer
Portfolio, has awarded Kaiser Permanente $8.6 million to develop one of the
world’s largest and most diverse repositories of genetic, environmental and
health data. 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.
