Questions & Answers

General

What is the purpose of the Kaiser Permanente Research Bank?

The goal of the KP Research Bank is to improve the health of our members and your community. The KP Research Bank collects health information and a small blood sample from volunteers. Researchers study this information to make health findings.

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Findings may include:

  • New knowledge about what keeps people healthy
  • New information about what makes people sick
  • Better treatments
  • How health is affected by the environment (air we breathe, water we drink)
  • How health is affected by genes (DNA)
  • How health is affected by behaviors (such as smoking)
  • How we can prevent illness in communities

People volunteer for different reasons including:

  • To help future family members live healthier lives
  • To help people in their community live healthier lives in the future
  • To help with findings
  • To improve the treatments for certain illnesses like diabetes, asthma, or cancer
  • To understand why some women have healthy pregnancies and some have complications
  • To make sure research findings benefit all types of people – regardless of age, race, ethnicity, or geography

We believe that giving members the chance to volunteer for research studies is one of the benefits of being a Kaiser Permanente member.

You do not have to pay to join the Kaiser Permanente Research Bank. Your information is kept secure. Your insurance will not be affected by joining or deciding not to join.

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What information do you share?

If you join, you agree to share the following information.

  1. Your Information from a health survey
  2. Your small blood sample (less than 2 tablespoons)
  3. Your Information from your past and future medical record

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Sharing your health information and sample is private. Your information will be de-identified. This means information like your name and address will be removed and replaced with a unique number. Learn more about what it means to de-identify by watching this 30 second video.

After you sign up online here, you will get detailed steps on how to complete your health survey and donate your small blood sample.

In the future, the program may collect other discarded biological material from your care at Kaiser Permanente.

Watch a 1 minute video about signing up

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Why is it important for you and members of your community to join?

Research Projects and Findings Should Represent Everyone

When all types of people are part of research, the findings benefit everyone. People are different. So if only certain groups participate in research, only certain groups may benefit from the findings.

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The KP Research Bank welcomes all KP members 18 years or older to join. We welcome people who are:

  • healthy or sick,
  • younger or older,
  • from different areas of the country, and
  • from all races and ethnicities.

The more people who join in, the more powerful the findings will be.

See why members joined

Watch a short video to
see why members joined

View member stories

Joining Helps Researchers and Doctors Make Health Findings

There is still a lot to learn about many illnesses and diseases. To learn more, they must study health information and biological samples, like blood. When you join, you provide the information needed to make these findings.

Your information may lead to better treatments or cures for people and communities in the future.

Watch this video to learn
more about what research is

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How is your health information kept private and secure?

Joining is safe, secure, and private

The health information you share is de-identified.
Learn more from this 2 minute video

This means that your name and other personal information are removed. It is then replaced with a unique study number.

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Insurance companies, employers, even family cannot get your information. Only researchers who do approved studies have access to the KP Research Bank data.

Your information is protected

The KP Research Bank is serious about protecting your privacy and information.

Samples are kept in locked storage areas and buildings. Personal health information and data are stored on servers and computers. They are protected through electronic security.

There are also laws in place to protect you (learn more about those laws here (Need Link?)). The Genetic Information Nondiscrimination Act is a federal law. The law makes it illegal for employers and health insurers to use certain kinds of information about your genes to discriminate against you.

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Why do you give a blood sample?

Blood contains a lot of information about how the human body works. For example, DNA can be found inside blood. DNA has the genetic information needed to build and work human bodies. Even small amounts of blood have enough DNA to use for research.

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If you sign up, you agree to give about two tablespoons of blood. The samples will be collected the next time you visit a Kaiser Permanente lab.

Kaiser Permanente does not support or conduct unethical research. For example, cloning is unethical and will never be done.

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What are the steps you take to participate?

  1. Visit kp.org/researchbank and click JOIN NOW. You will enter your Kaiser Permanente member number (on your insurance card) and birthdate to log in.

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  1. Read the consent form. Click I Agree, if you agree with what it says. If you have questions along the way, please call 844-268-2947. A copy of the consent form can be found here.
  2. After you sign the consent form online, you will be asked for your email address. You will receive an email with instructions in the next 1-2 days after you join online. Once you receive the email, you can visit any Kaiser lab at any time for your blood draw. There is no appointment is needed. You will not be charged a co-payment for the blood draw for the KP Research Bank sample.
  3. After you sign the consent form online, you will be asked to fill out a health survey. It takes about 20 minutes to complete. The survey asks questions about your health and habits that may affect your health, such as exercise and diet. You can take the survey before or after you provide a blood sample. You can skip any questions you do not want to answer. If you have questions along the way, please call 844-268-2947.
  4. You will receive reminders to complete the blood draw and survey. Once complete, you are a volunteer! Thank you for joining the KP Research Bank.

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Will the KP Research Bank share your personal results with you?

No, you will not get personal results back from research done through the KP Research Bank. The program will not give you health information or genetic information about yourself.

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The data from your personal information will be combined with thousands of other volunteers. This helps research scientists find patterns.

The KP Research Bank program is not medical care. The information is used for research. The program will not give you medical advice or treatment advice or plans.

The KP Research Bank will not give results to your doctor. No results will be put in your medical record. If you have a question about personal genetics tests, please talk with your doctor.

Eventually, researchers may be able to use the findings made from your participation to change health care and help people who live with all sorts of common diseases.

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Can you find out what research studies are using your information?

No. You will not be told which studies are using your samples and medical data. Not all participants’ samples are used for every study. However, you can find information about the studies that are being done by viewing the News on this website.

Are there any risks?

The physical risks are small. When you give your blood sample, you may feel brief pain or have some bruising from the needle. Infection, lightheadedness, and fainting are also possible, but not likely.

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The biggest risk is that someone could get access to the data the KP Research Bank has stored about you, despite best efforts to keep the information safe. The KP Research Bank believes the chance that this will happen is very small, but there is no guarantee that there is no risk.

The KP Research Bank will make every reasonable effort to protect your privacy.

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What are the benefits?

Your sample can be used along with those of other KP members. This will help scientists find new ways to prevent, discover, and treat health problems. The work researchers do could help improve health care and help many others.

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What if you are injured as a result of participating in the KP Research Bank?

The KP Research Bank only involves collection of information and does not involve the use of any drugs, devices, or procedures. Therefore, we do not expect that you would have any injury.

Can your participation affect your coverage or premiums?

No. The information and databases are used only for approved research. It will never be used to set or increase health insurance premiums or make decisions on your health insurance coverage.

Eligibility

How did you get my contact information and/or medical information?

Your Kaiser Permanente health plan membership agreement states that you may be contacted to participate in research. The KP Research Bank invites any member 18 years or older to join. However, joining the KP Research Bank is your choice. If you do not want to be contacted for the KP Research Bank in the future, please email us at ResearchBank@kp.org or call at 844-268-2947.

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This program is safe and does not put members like you at risk. Therefore the program received special permission to find and contact members who might want to sign up. Some members are found through information in their electronic medical record.

This study has been approved by an Institutional Review Board (IRB), a group that protects members like you.

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Why are you asking me to participate?

The KP Research Bank is asking all adult members of Kaiser Permanente, who are 18 years of age or older, to participate.

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It takes thousands of DNA samples to find out what genes and environment factors cause diseases. Researchers need to collect and study information of many people from the entire population. This includes healthy people and those who are not, people living with cancer, and pregnant women. All groups can help researchers understand disease and improve health care.

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Are you required to participate?

No. Joining is your choice. If you decide not to join now, or to withdraw your consent later, your decision will not affect your routine health care or health benefits.

How can you participate if you choose to?

Why are you asking pregnant women to participate?

Pregnant women’s blood is a very rich source of genetic and environmental information. This information could help scientists better understand diseases and health conditions that affect women, infants, and children.

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There is a special opportunity to participate if you are a pregnant woman who gets care at Kaiser Permanente sites in Northern California. Learn more by calling the KP Research Bank at 844-268-2947, Monday through Friday 8am-6pm Pacific Time.

Pregnant women in all other Kaiser Permanente regions can still join the KP Research Bank by clicking Join Now.

Join Now

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What if you decide you no longer want to participate?

If you wish to withdraw from the KP Research Bank, you must notify the KP Research Bank in writing at:

Michael Horberg, MD, MAS
Principal Investigator
Kaiser Permanente Research Bank
2101 East Jefferson Street, 3E, Rockville, MD 20852

If you have questions, please call 844-268-2947.

Expectations

How long will your samples and health information be used?

Your samples and information can be used for research for an unlimited amount of time. The information can still be used if you are no longer a Kaiser Permanente member. If at some point you decide you don’t want to continue, you can stop your participation.

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If you wish to withdraw from your agreement, you must notify the KP Research Bank in writing at:

Michael Horberg, MD, MAS
Principal Investigator
Kaiser Permanente Research Bank
2101 East Jefferson Street, 3E, Rockville, MD 20852

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Is there any cost?

No, participation is free. You will not be charged for procedures, such as the blood draw, related to collecting a sample.

Will you be paid to participate?

You will not be paid for participating.

Will the KP Research Bank contact you in the future?

Over time, stored samples may be used up or decrease in quality. The KP Research Bank will let you know if another sample is needed, You can decide at that time if you want to participate further.

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In the future, the KP Research Bank may invite you to take part in other research. Some studies may need extra information from you. For example, a scientist might ask you to give another sample or to fill out a different survey. The KP Research Bank will not contact you more than four times in a year. If you change your mind in the future about being a part of the KP Research Bank, you can ask to not be contacted again.

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Privacy and Security

How will you protect me as a study participant?

At Kaiser Permanente, we believe that research can help improve care delivery, medicines, and health care. Research can help improve the health of our members and many others. Research is the key to learning how we can make health care more effective. When you participate in research, it is very important to us that we protect your information. We want to share some ways that we keep study participants safe.

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Some people worry about participating in research. Often, it is because of bad things that have happened in the past.

In the past, some research was not ethical (not the right thing to do). Before rules and regulations were created and required for all researchers to understand and follow, some people hid the truth about research. Some people falsely believed that participants shouldn’t know everything about the research process. There were cases where people were misled about research and treated unethically. If you would like to know more about this harmful research please see the following link: http://www.cdc.gov/tuskegee/timeline.htm (CDC).

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Safeguards

Institutional Review Board

  • A Kaiser Permanente Institutional Review Board (IRB) reviews all research studies before they start. Members of the IRB include health care providers, researchers, and community members. The IRBs include people who bring many different views to the review of research.

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The IRB makes sure that:

  • The rights, safety, privacy, and dignity of all participants (human research subjects) are protected.
  • The benefits of the research outweigh the risks.
  • The risks to people who participate are as low as possible.
  • All research activities are reviewed so that all regulations are followed.
  • All research activities are reviewed so that all ethical principles are met.

KP Research Bank goes to great lengths to reduce risks of harm for all its participants. Your part might be as simple as completing a health survey and donating a small sample of your blood. There is also a very small risk that someone could get access to the data we have stored about you. We work hard to make sure this does not happen. Your privacy is very important, and we make every effort to protect it.

Certificate of Confidentiality

The KP Research Bank has a Certificate of Confidentiality from the federal government (through the National Institutes of Health). Having the certificate means:

  • No one can force the KP Research Bank to share information that may link to you. This includes a court subpoena by federal, state, or local civil, criminal, administrative, legislative, or other proceedings.

Advisory Boards

The Kaiser Permanente Research Bank has three Advisory Boards that offer guidance. These are the:

  • Community Advisory Board,
  • Scientific Advisory Board, and
  • Bioethics Advisory Board

Some Board members are experts in research and ethics. Other Board members are leaders in the community, or KP members. These Advisory Boards give feedback about:

  • The design of the KP Research Bank program
  • How to protect members’ data and privacy
  • KP Research Bank recruitment and informational materials
  • Ideas on how to engage KP members and recruit participants

Human Subjects Training and Informed Consent

All Kaiser Permanente research staff must complete special training called Human Subjects Training. ‘Human Subject’ is another word for ‘participant.’ In this training, research staff learns about ethical research and how to protect participant rights.

Learning about ‘informed consent’ is an important part of staff training. Before a person participates, you should understand what you are being asked to do, and why. Knowing this can help you make an informed choice about if you want to participate. This process is called ‘informed consent.’ Informed consent is required for most types of research.

To obtain ‘informed consent’ these things must happen:

  • Researchers must tell participants what they will be asked to do if they sign up for research.
  • A person must be told the benefits and risks of being a part of the research project.
  • A person must be told they will not personally benefit from the research.
  • A person must be told how they can withdraw from (leave) the project, if they change their mind.

This information is found on a consent form. You will need to sign a consent form online or on paper to participate in the KP Research Bank.

Protecting Privacy

Another concern people have is about privacy. The news shares types of stories about people’s personal information being shared in public or people’s electronic identity being stolen. We have strict processes in place to ensure your data is kept safe.

  • Kaiser uses strong electronic security to protect your health information and research data.
  • Your samples will be labeled with a unique number and kept in locked storage areas.
  • The KP Research Bank staff often reviews and updates our security steps.

Using Your Information in Research

If you agree to be a part in research, it is important to know that all research being done using your information is ethical. We will keep your information private and safe.

  • Only qualified and trained researchers can conduct studies using your information.
  • Only research that has been approved by a KP Research Bank Review Committee can be done.
  • Only research that has been approved by the IRB can be done.
  • Many research studies are reviewed by funding agencies, such as the National Institutes of Health. Studies are only funded if they are ethical and protect patient safety and privacy.

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Can you still join if you are Kaiser Permanente member through Medicare, Medicaid or the state insurance exchange?

Yes! Members with any type of Kaiser Permanente insurance can join.

Can you still participate if you are no longer a member of Kaiser Permanente?

Not at this time.

If you were a Kaiser Permanente member in the past, and joined the KP Research Bank, your de-identified information and sample will remain within the Research Bank. There is no need to notify the program unless you want to withdraw your participation.

Where can you learn more about genetics and health?

Yes! Members with any type of Kaiser Permanente insurance can join.

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National Institutes of Health (NIH) “Help Me Understand Genetics”

“Help Me Understand Genetics” is an introduction to genetics. It includes pictures and easy-to-understand explanations of genetics concepts.

It’s available here: https://ghr.nlm.nih.gov/primer#

National Institutes of Health (NIH) National Human Genome Research Institute

The Online Genetics Education Resources page has a list of genetics information, by topic.

It’s available here: https://www.genome.gov/10000464/online-genetics-education-resources/

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Is Kaiser Permanente involved in the Precision Medicine Initiative/All of Us Program?

  • Kaiser Permanente is not part of the Precision Medicine Initiative Cohort program at this time.

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  • The Precision Medicine Initiative/All of Us Program is being led by the National Institutes of Health. Like many big programs, it is complex. The government is still working through the details and plans about many important things including:
    • how people will be invited to join;
    • how people will share their data;
    • how participants’ private data will be handled and protected.

    Kaiser Permanente is concerned about the impact of these issues on our members and is not participating at this time.

  • If you are a KP member over age 18 and would like to participate in this type of program, you are invited to join the KP Research Bank. It is very much like the Precision Medicine Initiative Cohort program, but for KP members only. Learn more at org/researchbank.

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Contact the KP Research Bank