The Breast Cancer Family Registry (BCFR) takes your privacy and protecting the confidentiality of the information you provide seriously. The study follows strict privacy practices that govern how your information is collected, who will be able to see your information and how that information will be used. Protecting your personal information is extremely important to the BCFR and safeguards are in place to ensure your privacy.
Each of the six BCFR sites was granted approval by their own Institutional Review Boards (IRB). This approval must be renewed on a yearly basis through a renewal application. The IRB approves all aspects of the research study and ensures that it meets the required ethical criteria.
The main methods we use to protect your confidentiality are:
1. No names appear on the questionnaires. Each study participant is assigned a unique study identification (ID) number and only this ID number will be used on study materials.
2. The blood, saliva, and urine samples will also be coded with the study ID number and no names will appear on the tubes.
3. All study documents are stored in locked file cabinets or stored in restricted-access areas.
4. Information obtained or stored in an electronic form will be protected by access passwords, firewalls, and security measures.
5. Access is kept to a minimum. Only a small number of staff members who are approved by the Institutional Review Boards and have annual ethics training have access to participant information and they only access it for necessary operational purposes. The computers that hold your information are protected by the same kind of encryption technology that is used by banks to protect their customers’ online banking transactions.
6. Data files will be created for statistical analyses and all information will be identified by the study ID number only. When study results are published in medical journals, only statistical summaries will be presented, no study participants will be identified by name.
Each site of the BCFR has received a Certificate of Confidentiality that helps us protect the confidentiality of your data against compulsory legal demands (e.g., court orders and subpoenas) that seek the name or other identifying characteristics of a research subject. With a Certificate of Confidentiality, researchers cannot be forced by anyone to give out information that could identify you.
All these measures are required by Columbia-Presbyterian Medical Center’s Institutional Review Board, or IRB. Any medical institution that receives federal funds must have an IRB to guarantee that anyone who participates in research is treated fairly and confidentially.
The researchers who use data from the Registry must be approved by the Advisory Committee of the National Cancer Institute’s Cancer Family Registries. Once approved, the researchers are only given the data relevant to their research. All identifying information is removed, and the data is coded to remove any possible link to names, addresses, or other confidential items.
Participation in the Breast Cancer Family Registry is completely voluntary and can choose to stop at any time, to not answer certain questions, or decide to only participate in certain parts of the study and not others. It is your choice.