Health Research

March 8, 2007

Finding Connections

Kaiser Permanente researcher discusses the massive gene research project now under way to examine potential impact of the environmental factors on major disease

OAKLAND, Calif. – The Kaiser Permanente Northern California Division of Research made headlines recently when it launched one of the largest research projects in the United States. Researchers will examine how genes and the environment influence common diseases such as heart disease, cancer and diabetes.

KP's Research Program on Genes, Environment and Health (RPGEH) aims to explain how genes and environmental factors work together to influence the risk of getting a disease or affect its severity or outcome. The organization is now in the process of inviting members to participate in a survey, the first step in building the research program. This week, we caught up with Cathy Schaefer, PhD, director of the research program, to learn about the project as it gets rolling.

Q: Two weeks after the announcement, what is now your main focus?

A: First of all, we're waiting to get feedback from our members. We're interested to hear what members think and to see how they respond to the voluntary survey we mailed out. We're eagerly waiting to hear now what people have to say and what the participation will be. We have several mechanisms, including e-mail and an 800 number, through which members can give us their feedback. We've had a strong initial response. Since the initial announcement, we've had more than 100 e-mails from people who say they are interested in the research program and want to know how they can participate.

Q: This is a decades-long project. What are your hopes for results over the coming ten years?

A: It's difficult to predict where the breakthroughs might be. My hope is that over the course of the next 10 years, we will have several specific findings or results from the study that we can translate into a real improvement in how we take care of people with a disease or in improved prevention for a disease. Over the next several years, we'll begin to do studies on specific diseases. For each one, we'll be looking at genetic and environmental factors that influence whether someone will get a disease, and if they do, how severe it will be and how they respond to treatment. My hope is that for at least several conditions, we'll begin to have some answers.

Q : The National Institutes of Health last year launched a genes and environment project and the biotechnology company deCODE Genetics has also compiled a database containing the genetic makeup and medical history of more than 100,000 citizens of Iceland. In addition, a British government-backed endeavor will be gathering genetic material from 500,000 people. What will set KP's genetic database apart?

A : Unlike previous efforts, in particular the ones in Iceland and Great Britain, Kaiser Permanente's research program will reflect the diversity of the United States population. This is important because environmental factors differ between groups of people so it's very important that we be inclusive. The other thing that really separates our effort is that we have a community advisory panel set up to make sure we take our members' concerns and expectations into account. The panel comprises 22 people from all over Northern California and it will represent all ethnic and social communities from which KP members come. The group will meet quarterly.

Q: Could you describe the importance of KP's electronic health record, KP HealthConnect™, to your project?

A: We couldn't do this without high-quality, comprehensive information about people's health status and changes as they occur. The KP HealthConnect™ system is absolutely critical to the success of the project. The wealth of high quality information available in the KP HealthConnect™ system is in a way the centerpiece of everything.

Q: Participation in this study is entirely voluntary. What would you say to KP members to encourage them to participate and to reassure them that their health information will remain private?

A: This research program offers a unique opportunity to help find answers to questions that surround many diseases. Answers are within reach, but are only as good as the representation and diversity of the people who participate. Most scientists and doctors believe this is an area of research that has great promise for improving health in the future. We understand and are very much focused on peoples' concerns about any risks or potential problems that could be associated with participation. For example, all of the personal identifying information will be removed and kept separately in a carefully protected file. None of that information will be shared within KP. It will not become a part of individual's medical records and is strictly for research purposes.

The database is also protected with a series of state-of-the-art electronic security procedures. The people who have access to that information will be limited to a few individuals, and all access will be reviewed and audited. Finally, all research procedures including the privacy and confidentiality of information will be reviewed by an Institutional Review Board to preserve patient rights. That includes the release of any information that could harm them. There is also a state law in California that protects people from the use of genetic information to discriminate against them in terms of health insurance or employment and we will make sure that these rules are followed.

To e-mail this writer: Susannah.F.Patton@kp.org