Brain donation is the ideal way to obtain a confirmed diagnosis while also enabling research into neurological conditions. Many families who contact us about brain donation want genetic testing. You have likely been directed to this page as the most efficient way to provide you the information about genetic testing.
The brain bank we work with, Mayo Clinic, does do genetic testing on donated brain tissue but does NOT share these results with families. It is not allowed to share the results with families because the brain bank is not a CLIA-certified lab. CLIA-certified labs are required to provide genetic counseling. We don’t believe that any brain bank is CLIA-certified.
If there is a strong family history of dementia, Mayo definitely does genetic testing prior to the preparation of a neuropathology report for the family. In these reports, Mayo often says things like “we generally see this particular pathology in those with a certain genetic mutation,” or “given the family history of dementia, we recommend your family consider genetic testing.” Of course these are strong clues that something is being inherited in the family.
So what can a family do to accomplish genetic testing? The best is to arrange for genetic testing while the person is still alive. You might try one of the options below.
If your family member has passed away and his/her brain has been donated, if your family can find a reputable testing lab that can accept frozen brain tissue in slides, then the legal next-of-kin can direct the brain bank (including the Mayo Clinic) to send tissue to the lab for genetic testing. Your family pays for the testing (but not the shipping). You can ask any of these options below if they accept frozen brain tissue and can do genetic testing from that.
Let us know if you have additional questions but note that we are not genetics experts or genetic counselors!
Athena Diagnostics
Email: [email protected]
Offers pre-mortem testing
Invitae
San Francisco, CA
Phone: 800-436-3037
Email: [email protected]
Office Hours: M-F 5am to 5pm PT
Offers pre-mortem testing and genetic counseling for $250. This lab is CLIA-certified.
Prevention Genetics
Marshfield, WI
Phone: 715-387-0484
Email: [email protected]
Office Hours: 7:30 am – 5:30 pm CST
Offers pre-mortem testing of 18 genes associated with dementia (“dementia panel”). Or testing specific to the suspected genetic disorder (“custom panels”).
Offers post-mortem testing
Offers pre-mortem banking for the case when testing is not desired at the present time