INFORMATION ABOUT PRIVACY OF BRAIN DONORS AND THEIR FAMILY
Health information that identifies an individual is private under federal law; its handling is regulated according to the Health Insurance Portability and Accountability Act, was passed by Congress in 1996.
HBTRC staff is highly trained to follow this regulation, and several measures are in place to protect the confidentiality of brain donors and their families:
- The Staff at the HBTRC will assign a code number to the tissue and health information. The donor’s name, medical record number, or other identifiable information will not be stored with the tissue or health information. The key to the code that connects the name and other identifiers to the tissue and information will be stored securely in a separate file.
- The coded tissue and health information may be shared with researchers to carry out studies on the human brain and on brain disorders. We will not share information that identifies the donors with researchers.
- 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 health information. The HBTRC will share potentially identifiable health information (e.g. date of birth, date of death, dates of admission to hospitals) with the national institutes of health (NIH; NIMH, NICHD, and NINDS brain and tissue repository, Neurobiobank). The central banks may share these samples or information with other qualified and approved researchers to do more studies. Results or samples given to the central banks will not contain information that directly identifies the donor. There are many safeguards in place at these banks to protect the donor’s privacy.