A federal Certificate of Confidentiality (Certificate) has been issued for this research to add special protection for information and specimens that may identify you. With a Certificate, unless you give permission (such as in the consent form) and exceptions such as if you give us permission to release study information to a healthcare provider or as described in the “mandatory reporting requirements”, the researchers are not allowed to share your identifiable information or identifiable specimens, including for a court order or subpoena.
Certain information from the research will be put into your medical record and will not be covered by the Certificate. This includes records or medical tests or procedures done at the hospitals and clinics, and information that treating health care providers may need to care for you. Please ask your study doctor if you have any questions about what information will be included in your medical record. Other researchers receiving your identifiable information or specimens are expected to comply with the privacy protections of the Certificate. The Certificate does not stop you from voluntarily releasing information about yourself or your participation in this study, including sharing results that we return to you.
Even with these measures to protect your privacy, once your identifiable information is shared outside of Harvard University, Morehouse, or Emory, we cannot control all the ways that others use or share it and cannot promise that it will remain completely private.
Because research is an ongoing process, we cannot give you an exact date when we will either destroy or stop using or sharing your identifiable information. Your permission to use and share your information does not expire.
The results of this research may be published in a medical book or journal, or used to teach others. However, your name or other identifiable information will not be used for these purposes without your specific permission.