Our Commitment & Goals
The Research Program
KP’S commitment to improve your health
The Research Program on Genes, Environment, and Health came about in response to technological advances that made it possible and Kaiser Permanente’s commitment to improving health.
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"This research is for the greater good, in my opinion."
- Member from Sunnyvale
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Program Design
Researchers are collecting medical, lifestyle, demographic, environmental, and in some cases, genetic information, from up to 500,000 Northern California Kaiser Permanente members. Information from each volunteer’s medical record and their responses to any surveys they complete for the Research Program will be entered into a new, secure computer database.
For those who agree to give a genetic sample, DNA from their saliva and/or blood samples will be used to obtain information about their genes and exposure to environmental contaminants. Having all of this information together in a database is called a "databank."
Scientists will use information from the databank to study physical health and mental health issues, including, but not limited to, how genes and the environment:
- Affect the risk of getting different diseases.
- Influence the severity of diseases.
- Affect a person’s response to particular medications.
Scientists from Kaiser Permanente’s Division of Research (DOR), and other researchers they collaborate with, will use the databank to conduct many separate studies for a number of years.
We also plan to study the ethical, legal, and social implications of conducting large studies of genetics and health.Involving others
Large studies of genetic factors in common diseases are new, and that means there are many unknowns. Because of this, a key component of this research is to involve others, both inside and outside of Kaiser Permanente.
DOR researchers are committed to obtaining extensive input from other research scientists, ethicists, and members of Kaiser Permanente Northern California and the community at large to ensure that the Research Program addresses any issues that arise. Information about our Community Advisory Panel and Scientific Advisory Panel can be found in the section on “The Research Team.”
Our core values
The core values that are guiding the Research Program are to:
- Conduct research that is applicable to the entire adult population.
- Adhere to the highest ethical standards.
- Protect participant privacy and confidentiality.
- Communicate potential benefits and risks clearly.
- Inform KP members about research findings.
- Respond to concerns.
- Collaborate with other researchers who share our values.
Early considerations
Before making a commitment to the Research Program, we decided to survey KP members to determine how they felt about it. In 2001 we surveyed almost 2,000 members, by phone, asking about their attitudes towards genetics research, Kaiser Permanente’s involvement in it, and about giving blood samples for DNA analysis.
Almost 90% approved of the research, and 80% indicated they would be willing to donate blood samples for DNA analysis. This response was very encouraging and influenced our decision to proceed with this research program.
Volunteer recruitment and database development
From 2005-2007, researchers set up community and scientific advisory panels, conducted focus groups, developed written and web-based materials that explained the program to members, received Institutional Review Board (IRB) approval to begin contacting members and conducted a mailed survey to 1.9 million Northern California members asking them to participate in the Research Program by completing a Health Survey.
With IRB review and approval, researchers organized member medical data into several disease-based databases that can be used to analyze rates of disease and identify potential volunteers for studies of specific conditions. They also began collecting public environmental data (like air quality data) that can be mapped and linked to participant residences for information on environmental conditions that participants are exposed to.
Saliva sample collection
In early 2008, researchers developed the materials for saliva sample collection, and they conducted a pilot study to make sure participants understand what they are being asked to do and how information from the samples will be used. The results from the pilot were used to finalize the materials and saliva sample collection is now occurring. More information on sample collection can be found in the "For Participants" section.
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The content of this Web site has been reviewed and approved by the KPNC IRB.