About this Program: Core Values and Community Partnerships

The Research Program strives to uphold these core values:

  • Adhere to the highest ethical research standards.
  • Protect participant privacy and confidentiality.
  • Clearly communicate the potential benefits and risks of participation.
  • Construct a Research Program that reflects the diversity of the community so that benefits from the research can be applied to a wide population.
  • Respond to the concerns of participants, community groups and other stakeholders.
  • Inform participants and the public about research findings.
  • Collaborate with other researchers who share our values.

Community Partnerships

Large research programs such as the RPGEH are new and there are few models to follow. In order to get the best advice and be sure we have relevant input from many interested communities and stakeholders, the RPGEH consults and involves others, both inside and outside of Kaiser Permanente.

RPGEH scientists and staff are committed to obtaining input from other research scientists, ethicists, members of Kaiser Permanente in Northern and Southern California, and the community at large. This ensures that the research program addresses the goals and concerns of all stakeholders.

Outreach to community partners began in 2003

Development of the RPGEH has required careful planning, and consideration of community input, which began in 2003 when we surveyed almost 2,000 members by phone. We asked members about their attitudes regarding genetics research, Kaiser Permanente's involvement in it, and about giving blood samples for DNA analysis. Because Kaiser Permanente members responded positively, our planning continued.

From 2005 to 2007, researchers set up a Community Advisory Panel (CAP) and a Scientific Advisory Panel (SAP). We also conducted 11 focus groups with Kaiser Permanente members and nonmembers to learn more about the values, expectations, and potential concerns of members and others regarding the development of a research program that would involve many volunteers in research on genetic and environmental factors in health. Using the results of these groups and the earlier survey, as well as consulting with experts in the field, the RPGEH developed materials that explained the program to our members and received approval from the Institutional Review Board (IRB) to organize the Research Program and begin contacting members about participation.

In 2007, we mailed materials about the RPGEH to 1.9 million Northern California members asking them to participate in the Research Program by completing a health survey. Nearly 400,000 members responded to that survey.

In early 2008, we developed the materials for saliva sample collection and conducted a pilot study to make sure participants understood what they were being asked to do and how information from the samples will be used. The results from the pilot were used to finalize the materials.

In 2009, we expanded our Community Advisory Panel (CAP) to involve additional community stakeholders, who provided insight and advice on issues such as community outreach, consent and re-consent processes, privacy and data sharing issues, and how to increase participation among under-represented groups.

In 2010, we convened a Bioethics Advisory Panel (BAP) for an initial two year term, in order to provide RPGEH leadership with guidance regarding bioethical issues associated with the program, as well as best practices in the areas of ethics and governance.

In 2011, our third Community Advisory Panel (CAP) began another two year term, with 20 members from a wide array of community organizations, including environmental advocates, community health advocates and service providers, health educators, and individuals with experience and expertise in legal, medical, genetics and public health issues. As of 2011, CAP members also serve on the Bioethics Panel and Access Review Committees, providing a community voice in the discussions of ethical, legal and social implications of research conducted through the RPGEH.

In 2012, the Department of Research and Evaluation (R&E) at Kaiser Permanente in Southern California joined the RPGEH. A Southern California Community Advisory Panel will advise the program.