Protecting Your Privacy
The Partners HealthCare Biobank is a research repository that stores samples and data that are linked to each person’s medical information. The goal of the Partners Biobank is to make these samples and data available to researchers to study how genes, lifestyle and other factors affect people’s health and contribute to disease. Samples may be used for many types of research.
Participation in the Partners Biobank is voluntary. We ask that you read the Informed Consent Form that provides details on the purpose of the study, how your samples and information may be used, and the risks and benefits of joining this study.
When you provide consent, you allow collection and storage of up to fifty milliliters of blood, linkage of the blood sample with your Partners HealthCare electronic medical record, and storage of a health information questionnaire that collects additional information about health behaviors, lifestyle, and family history. When you provide consent, you also agree to be re-contacted by the Partners Biobank in the future for additional information or samples.
In order to obtain samples and data, a researcher must first submit a request in writing. This request includes a description of the research to be done, a list of the researchers involved, and what type of samples will be needed. In most cases, the Partners Biobank will provide a de-identified sample – in such cases, the sample is assigned a code and the researcher does not receive any information that could be used to identify you.
If a researcher needs identifiable information, he or she must first get approval from the Partners Institutional Review Board (IRB). The Partners researcher would submit a request to the IRB to access identifiable sample and health information. The IRB evaluates these requests carefully before approving them to help ensure that your privacy is protected and that the research request is sound.
Researchers often work with other researchers who may be at another Partners institution, another research institution in Massachusetts, another state or country or a for-profit company. Researchers outside of Partners institutions will not be able to see your identifiable information. Researchers outside Partners can only get coded samples.
The Partners Biobank privacy safeguards are based on laws and federal regulations. One key law is the Privacy Rule that is part of the Health Insurance Portability and Accountability Act commonly known as HIPAA. Another is the Genetics Information Non-Discrimination Act, or GINA which is a federal law that protects genetic information from being used to discriminate against people when they apply for health insurance or employment. GINA does not protect people when they are applying for life or disability insurance.
One way we safeguard your identifiable information is by assigning a code to your sample when it is received by the Partners Biobank. The key to the code is stored in a secure file that is kept separate from your blood sample and health information. The only people who can see your identifiable information, such as your name, medical record number, and dates, are trained staff from the Partners Biobank or Partners researchers who have approval from the Partners Ethics Committee to use you information for research.
For any research, not just the Partners Biobank research project, there are situations in which we must provide identifiable information to others for research oversight, quality control and public health and safety. Groups or individuals who may see your information for these purposes include the Partners Ethics Committee, organizations that provide independent accreditation and oversight of hospitals and research, federal and state agencies (such as the Food and Drug Administration), quality control groups, and people or organizations that we hire to do work for us, such as data storage companies, insurers, and lawyers.
We share your identifiable health information with these oversight groups only when we must, and we expect anyone who receives it to protect your privacy. However, once your information is shared outside of Partners, we cannot promise that it will remain private.
We hope that this information helps you to understand the important information provided in the Informed Consent Form. After you have read the Informed Consent Form, if you have any additional questions, you can view answers to frequently asked questions in the Frequently Asked Questions of this web site or feel free to contact our staff at the Partners Biobank.