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Public Policy of the Brain Injury Network
Policy approved by the Board 6-12-10
Profiting from Exposing Brain Injury Survivors' Identities:
We understand that there are times when particular case scenarios of people with brain injuries will be discussed in medical journal articles, lectures, books, etc. However, we object strongly to professionals identifying particular survivors by name or by other identifying private information in journals, lectures and books. If it is possible to ascertain who exactly the research subject was, the professional has gone too far. In the old days, the actual identity of research subjects was guarded by the professionals. For example, the identity of the famous neurological patient “H. M.” was guarded expertly by his doctors for over 50 years until after his death. This is the right way for medical professionals and researchers to go about things.
There is now a very disturbing trend where certain professionals are publishing too much information about their research subjects in articles and books. It is enough that in the interest of science we find out the most intimate details about these folks. No one should know who these people actually are. There is no excuse for any professional to share such detailed identifying information. It is a breach of their duty as professionals to protect the best interests of their study subjects who have brain injuries. It is too easy to take advantage of some people with brain injuries, and get them to sign disclosure consent forms. Don’t expose these folks.
Protect our dignity. Guard our privacy.