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Pregnancy Project Frequently Asked Questions

1. What is the Kaiser Permanente Research Program on Genes, Environment and Health?

2. Why is this research important?

3. What diseases and health conditions will be included in this research program?

4. What does this research program involve?

5. Why is Kaiser Permanente doing this kind of research?

6. Why are you asking me to be a part of this research program?

7. How will you protect my privacy and confidentiality?

8. Will participation in this project affect my medical treatment or insurance fees?

1. What is the Kaiser Permanente Research Program on Genes, Environment and Health?

The Research Program on Genes, Environment, and Health (RPGEH) is an important new research project designed to identify genes and other factors that can lead to disease or affect how adults and children react to medications. The goal is to improve the health of Kaiser Permanente members and the general public through increased knowledge about the influence of genes and other factors on health.

2. Why is this research important?

When we understand how genes and the environment interact to affect adults’ and children’s health, we will be able to use this information to help individual people improve their health. One example of how this research might be used in the future is that a person’s genetic information could be used by his or her doctor to prescribe the medication that is the most effective for that person and that causes the fewest side effects.

3. What diseases and health conditions will be included in this research program?

The research program will include many conditions that affect people at different ages, including heart disease and stroke, cancer, diabetes, asthma and lung diseases, autoimmune disorders, Alzheimer’s disease and other neurological disorders, mental health problems and chemical dependency, pregnancy and reproductive disorders, and infectious diseases such as hepatitis.

4. What does this research program involve?

We are asking pregnant women to give a small sample of their blood during two regularly scheduled prenatal lab visits, and we are asking all adult KPNC members to give blood or saliva samples. If members decide to participate, we also ask them to complete a health survey. So far, more than 180,000 KPNC members have agreed to give a sample and complete the survey.

5. Why is Kaiser Permanente doing this kind of research?

Kaiser Permanente is one of few organizations in the United States with both the scientific expertise and a membership that is large and diverse enough to be useful for a broad array of studies in this field. The Division of Research has been conducting medical and scientific studies since 1961, many of which have resulted in our ability to detect diseases in earlier stages and new treatments for common conditions, like diabetes and cancer.

6. Why are you asking me to be a part of this research program?

Pregnant women’s blood is an especially rich source of genetic and environmental information that could help scientists better understand both common and unusual diseases and health conditions of women, infants, and children.

7. How will you protect my privacy and confidentiality?

Privacy protection is an essential component of this research. No results from the RPGEH will be placed in participants' medical records or shared with Kaiser Foundation Health Plan. We will also take the following steps to protect participants' privacy and keep this information confidential.

  1. All RPGEH information will be kept in a computer databank that is only for research. The computer system that holds the entire databank, including the genetic records, is located in a locked and physically secure facility, and there are electronic security measures to prevent attacks on the databank.
  2. Access to the databank is limited to authorized Kaiser Permanente Division of Research staff. All Division of Research staff have signed agreements promising to safeguard participant data and use it only for approved purposes.
  3. Within the RPGEH databank, we will label participants' DNA samples, genetic information, survey answers, and medical record data with a unique study ID number only. Participants' study ID numbers will not be the same as their other personal numbers, such as phone numbers, social security numbers, or medical record numbers.

8. Will participation in this project affect my medical treatment or insurance fees?

No. Your participation in the research will not affect your health care, your membership in Kaiser Permanente, the amount you pay for dues or your insurance record, now or in the future. There will be no mention of your participation in any of your medical or insurance records, and you can drop out of the project at any time.