Frequently Asked Questions
The following list includes questions frequently addressed to our Research Coordinators. Click the question to view the answer. If you have a question that is not included in the list below, please do not hesitate to contact us.
The Partners Biobank is a large research program designed to help scientists understand how people’s health is affected by their genes and other factors. A person’s risk for getting a disease depends on many factors. Your risk includes the genes you inherit from your parents as well as environmental factors. Environmental factors include whether you smoke or exercise, where you work, your body mass index, and other factors. Scientists believe that even small differences in genes or these other factors can affect whether you get a disease or medical condition, such as asthma, heart disease, diabetes, arthritis, cancer, and many others. We hope these studies will help researchers develop better ways to prevent, detect, and treat disease.
A blood specimen will be collected from you.
- If possible, we will use samples collected when you have a blood draw as part of your routine clinical care.
- We may ask you to provide the research sample separately, as an extra needle stick.
In the future, as part of your routine care, your doctor may collect blood or tissue samples from you for testing as part of your medical care. After the tests for your medical care are completed, part of your samples may be left over. Normally these leftover samples would be thrown away. We are asking you to allow us to collect and store any leftover clinical samples in the Partners Biobank. This collection will not affect testing of your samples for medical purposes.
We would like your permission to look at health information in your medical records. This will include your medical diagnoses, test results, and prescriptions. In the future we may review your medical records to update your health information.
We will also ask you to complete a short questionnaire. This will take about 5-10 minutes. You may skip any questions you do not want to answer. Your responses will not change your medical care in any way. For example, the questionnaire will ask you about:
- Whether you smoke cigarettes or how much you exercise.
- The environment in which you live and work (for example, your exposure to the sun and what type of job you have).
- Your family history (for example, whether your parents have diabetes or cancer).
Staff at the Partners Biobank will assign a code to your samples and health information. Your name, medical record number, or other information that easily identifies you will not be stored with your samples or health information. The key to the code will be stored securely in a separate file.
We will store your samples and information indefinitely.
You have a right to withdraw your permission at any time. If you do, your samples and information will be destroyed. However, it will not be possible to destroy samples and information that have already been given to researchers. If you decide to withdraw, please contact the Partners Biobank staff in writing.
422-EBRC, 221 Longwood Ave.
Boston, MA 02115
OurGenes, OurHealth, OurCommunity and the Partners Biorepository for Medical Discovery have merged into one research program. This program is called the Partners HealthCare Biobank (Partners Biobank). If you provided your consent to OurGenes, OurHealth, OurCommunity or the Partners Biorepository for Medical Discovery, you have provided consent to the Partners Biobank.
Many types of research may be done with your samples. Some studies will do genetic research to look at your DNA and genes, including an examination of genetic variants. Others may look at proteins and other products made by your body.
Genetic research uses DNA, genes, and other health information to study the links to different types of health conditions. This type of research explores why some people are more likely than others to get certain diseases. This type of research may show why some people respond to certain medicines or have side effects from other medicines. The long-term goals of genetic research are to learn how to better understand, prevent, diagnose or treat diseases.
Some genetic research looks at a small portion of your genes, while other genetic research may study all of your genes. Research that looks at all of your genes is usually trying to find out if there is an association between a medical condition and a change in one or more genes.
In order to allow researchers to share research results, agencies such as the National Institutes of Health (NIH) and others, have developed secure information and specimen banks that collect and store research data and samples from genetic studies. These central banks may share this information with approved researchers to do more studies. Genetic samples and results given to the central banks will not contain your name or other information that directly identifies you. There are many safeguards in place at these banks to protect your privacy.
Your sample could also be used to create a “cell line”, which is an unlimited supply of cells to use for research. Some cell lines contain stem cells developed from your cells and can be turned into different types of tissue, like heart or muscle cells. In the future, these types of cells could be used to treat people with certain diseases, like Parkinson’s disease.
Your sample may be used as a healthy control in research to study why some people have a disease that you don’t. If researchers know what causes disease, they can help find ways to prevent it in the future.
It is not possible for us to list every research project that may be done. Also, we cannot predict all of the research questions that will be important in the future. One of the most valuable features of the Partners Biobank is that it can be used to answer new questions and continue to generate discoveries for years to come. As we learn more, we may use your samples and information to answer new types of research questions related to human diseases.
You should not expect to receive any results from your participation in this research. Research using your sample is just a stepping-stone in learning about diseases. Most of the findings that come from studying your sample will not be relevant to your health even though they may increase our understanding of diseases. However, in the future, it is possible that some of the research findings obtained from your sample could be relevant to your health.
If our team of experts decides that results from your sample are of high medical importance, the study staff will send you a follow-up letter. This letter will not provide any specific results, but will let you know that a healthcare professional who understands the health-related research findings will be contacting you to offer this personal health-related research result. You may decide not to get this information when you talk to the healthcare professional. At your request, this healthcare professional will provide the health-related research findings to your doctor.
It is important to remember that research results are not the same as clinical tests. Your doctor may need to repeat the research findings using a certified clinical laboratory to be certain that the result is correct.
It is possible that you will never be contacted with individual research findings. This is because your samples will not be used in all research, and because researchers will often look at only a small portion of your genes or other information. Not receiving a letter does not mean that you don’t have, or won’t develop an important health problem.
The main risk of allowing us to use your samples and health information for research is a potential loss of privacy. We protect your privacy by coding your samples and health information.
There is a risk that information about taking part in genetic research may influence insurance companies and/or employers regarding your health.
Research results obtained in this study will not be placed in your medical record unless we contact you with a finding of high medical importance. If a research result is considered of high medical importance, the test will be repeated, and then reviewed by the Partners Biobank’s leadership, who will determine whether to share this result with you. We will contact you to make an appointment with a medical professional to discuss these results. If you decide to share these results with your doctor, you may undergo further testing for clinical reasons. The clinical test results would then go into your medical record.
We do not think that there will be further risks to your privacy by sharing your samples and whole genome information with other researchers; however we cannot predict how genetic information will be used in the future.
There is a very small risk of bruising or infection from drawing blood similar to what might occur from a routine blood draw that you get for your doctor.
Protecting your privacy.
All of your identifiable health information is private under federal law. However, there are certain cases where we may need to release your information to organizations such as federal and state agencies and audit committees that oversee research. We do not release any information stored in the Partners Biobank to insurance companies.
The main risk of your participation in this research is a loss of privacy. By sharing your information from your medical record with researchers, it is possible that someone could find out private information about you. However there are many safeguards in place to protect your privacy. These include assigning codes to your samples and information, requiring ethics board approval for researchers and staff, and an oversight committee.
Research results that are provided to central banks also have many procedures to protect your privacy and confidentiality. While we think that there are only minimal risks associated with sharing research results, we cannot predict how this information might be used in the future.
Your privacy is very important to us and we will use many safety measures to protect your privacy. However, in spite of all of the safety measures that we will use, we cannot guarantee that your identity will never become known. Although your genetic information is unique to you, you do share some genetic information with your children, parents, brothers, sisters, and other blood relatives. Therefore, it may be possible that genetic information from them could be used to help identify you. Also, it may be possible that genetic information from you could be used to help identify them.
Collaborating with researchers.
The Partners Institutional Review Board (IRB) is certified to approve all researchers who will want to use samples and health information for their studies. The IRB ethics board independently reviews and watches over all research studies involving people. The board follows state and federal laws and codes of ethics to make sure that the rights and welfare of people taking part in research studies are protected.
Your coded samples and health information may be shared with researchers at Partners institutions. They may also be shared with researchers at non-Partners institutions or with for-profit companies that are working with Partners researchers. Your samples will not be sold for profit. We may use your samples and information to develop a new product or medical test to be sold. The hospital and researchers may benefit if this happens. There are no plans to pay you if your samples and information are used for this purpose.
We will only share information that identifies you with researchers within Partners who have approval of the Partners ethics board (IRB). We will not share information that identifies you with researchers outside Partners.
In order to allow researchers to share research results, agencies such as the National Institutes of Health (NIH) have developed secure banks that collect and store research samples and/or data from genetic studies. These central banks may store samples and results from research done using Partners Biobank samples and health information. The central banks may share these samples or information with other qualified researchers to do more studies. Results or samples given to the central banks will not contain information that directly identifies you. There are many safeguards in place at these banks to protect your privacy.
While there is no direct benefit to patients for participating in this project, your participation could help us better understand, treat, and even prevent diseases that affect your loved ones, your future generations, as well as the larger community. Your samples and information will help further progress of research studies and medical care at our Partners hospitals, such as Massachusetts General Hospital and Brigham and Women’s Hospital.
You will not directly benefit from research conducted on your samples stored in the Biobank. We hope that research using the samples and information will help us understand, prevent, treat, or cure diseases.
You will not receive payment for your samples. When you come into the hospital for a blood draw, either scheduled by your doctor or scheduled by Biobank staff, your parking cost may be covered or you may receive a cafeteria voucher.
There are no costs to you to participate in the Partners Biobank.
The Genetic Information Nondiscriminatory Act of 2008 (GINA) is a federal law that protects you from discrimination based on your genetic information. It means that you cannot be denied health insurance or employment based on any genetic test results. The law does not apply to life insurance or long-term care insurance.
If you have any questions before you sign this consent form or after you join the study, you can contact Partners Biobank staff at:
422-EBRC, 221 Longwood Ave.
Boston, MA 02115
The person in charge of the Partners Biobank is Scott T. Weiss, MD.
If you want to speak with someone not directly involved in the study, contact the Partners Human Research Committee at 617-424-4100.