Frequently Asked Questions
HOW IS MY PRIVACY PROTECTED?
Will my information be kept confidential? How will this be done?
All of the Sister Study staff sign confidentiality forms and undergo training in research ethics. We have put in place several protections for the privacy of your data. When your data are collected, they are labeled with an ID number. After your data are collected, your samples, questionnaires, and interview data are stored separately from all personal identifiers, such as your name, address, and telephone number. Your personal contact information is kept in separate files accessible only to Sister Study staff.
The Sister Study 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.
What is a Certificate of Confidentiality and what does this mean for me?
A Certificate of Confidentiality helps researchers protect the privacy of subjects in biomedical, behavioral, clinical, or other research projects 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.
What protection does a Certificate of Confidentiality provide?
Confidentiality Certificates are issued by the Department of Health and Human Services to provide privacy protection to research subjects. These certificates are authorized by law in provision 301(d) of the Public Health Services Act (42 U.S.C. Section 241(d)). A Certificate can be used by the researcher to avoid compelled "involuntary disclosure" (e.g., subpoenas) of identifying information about a research subject.
What protection does a Certificate NOT provide?
A Certificate of Confidentiality does NOT prevent researchers from voluntarily disclosing information about a participant if it is considered necessary to protect a participant or someone else from serious harm, as in cases of child abuse. A Certificate of Confidentiality also does not prevent you or a member of your family from voluntarily releasing information about yourself or your involvement in this research. If an insurer or employer learns about your participation from you, and you consent in writing to having information about you released, then we cannot use the Certificate of Confidentiality to withhold this information. This means that you and your family must also actively protect your own privacy.
How long is my information protected under the terms of the Certificate?
The Certificate covers the collection of sensitive research information for a defined time period (the term of the project); however, personally identifiable information obtained under protection of a Certificate is protected forever. In other words, we researchers can collect new data under the certificate only during the agreed upon length of the study. But your privacy is protected even after the study has ended.
What will you do with all of my information?
We will compare the data provided by study participants who develop breast cancer with data from participants who do not. This will help us understand what is different about the two groups, and what the likely risk factors are for breast cancer.
Will my insurance company or employer obtain the information I give you as part of the study?
No, we will not provide any study information to insurance companies or employers, as it is strictly protected by confidentiality rules. However, this does not prevent you or a member of your family from voluntarily releasing information about yourself or your involvement in this research should you choose to do so on your own.