Can there still be an open casket?

Yes. The removal of brain tissue does not cause any disfigurement.

Will the funeral arrangements be delayed?

With pre-planning and careful coordination, there should be no delays for typical funeral arrangements. The procedure will be performed within the first 24 hours after death. The UM Brain Bank staff will work with funeral directors to expedite the transition from the place of death to the Medical Center, and from the Medical Center to the funeral home.

Do I have to tell my relatives, or will they know the brain has been removed?

You do not have to tell anyone if you do not wish to. Only on close inspection would anyone know that an autopsy has been performed.

Does donating brain tissue for research purposes interfere with religious beliefs?

Brain donation does not conflict with most religious beliefs. If you have any questions concerning this issue, please contact your religious leader, priest, minister, imam, or rabbi.

Who can legally grant permission for an autopsy to be performed?

Prior to death, an individual or family member can indicate their intent by signing a provisional consent. This permits arrangements to be planned. However, after death, the person's legal next-of-kin must authorize the autopsy before it can be performed. The following persons, in order of priority, may provide such consent:

1) Spouse

2) An adult son or daughter

3) Either parent

4) An adult brother or sister

5) A guardian of the decedent at the time of death.

6) Any other person authorized or under obligation to dispose of the body.

If there are several individuals in a category they must all agree. For example, in priority level 2, all adult children have equal authority and must be in agreement. Signing a provisional consent can help others by documenting a patient’s wishes.

Which organs are examined at autopsy?

Under normal circumstances, the brain is the only organ examined. However, under special circumstances a complete autopsy in which all major organs are examined may be done. Specific authorization would be needed from next-of-kin for a complete autopsy.

Will an autopsy report be sent to the family?

Yes. Our routine is to transmit an autopsy report to family members. A prearrangement process assures that a written report of the autopsy results will be sent to you. Typically, the report is sent to the family 4 months after completion of the autopsy procedure. Once you've received the autopsy report, please contact us if there any questions about the report and we will discuss the autopsy results and its implications with you.

What should we do with the report?

We recommend that you keep the report in a safe place for future reference. The numbers on the report are important because they help family members obtain further information in the future if it is needed.

Who else will see the autopsy report?

The autopsy report is a medical document to be seen only by persons who have specific permission (usually the next-of-kin and the family's local physician if requested). As medical records, autopsy reports are protected by the standard confidentiality safeguards for medical records. The University of Michigan and clinical research studies keep research records separate from patient medical charts. These research records are kept confidential to the full extent of the law. The Brain Bank is a national resource and shares data with investigators using the Brain Bank for research studies. Information is sent to investigators without identifying personal information to maintain confidentiality.

What research will be done on the brain tissue?

Tissue samples and results of clinical testing are shared with scientists after their research proposals are reviewed and approved by the Brain Bank. These studies may lead to improved understanding and advances in the diagnosis and treatment of neurodegenerative disorders. Samples are provided for biochemical and genetic studies labeled with numbers rather than names, to keep information anonymous. The results of these studies also may result in commercial products or patents. Families will not be responsible for any development costs nor share in the profits of any commercial application. If you want to learn about the results of any research studies that have included the patient's brain tissue you may contact the Brain Bank Coordinator (734-936-6267, pager 9198) for further information.

Will genetic analysis be performed routinely?

No, genetic testing is not appropriate or possible for the majority of brain tissue we receive. We store frozen brain tissue in every case possible, since it is most appropriate for genetic analysis. Genetic studies may be performed in some instances, this will depend on the neurological disease under investigation, or if a familial history can be identified. These studies may be done at the University of Michigan or at other collaborating laboratories.

If genetic analysis is performed, will family be informed?

Family members are not automatically informed when genetic testing of tissue is done. To inquire about the availability of genetic test results, contact the Brain Bank Coordinator (734-936-6267, pager 9198). All genetically related individuals may request the results of genetic testing. Results will be released only to a physician, who will assist with counseling and interpretation of results. There is a possibility that genetic test results will be unavailable or impossible to interpret with certainty.

Relatives have the right not to know the results of any genetic test(s). Relatives may not want to know about test results or may want to keep this information out of their medical records because it has the potential to affect insurability, employability, and social esteem.

Who else will see the results of genetic tests, if they are performed?

Results of genetic tests, like other research results, are kept separate from patient medical charts in the Brain Bank database and are kept confidential to the full extent of the law. These genetic test results are linked to personal information in the database. Genetic test results are shared with other investigators when appropriate for their research. In these cases, results are shared without identifying personal information to maintain confidentiality.

Are there any costs or fees involved?

There is no charge for the arrangement and performance of the autopsy when perform at University Hospital, Ann Arbor. If a patient moves to another area, the Brain Bank Coordinator will work closely with you to locate a local hospital and pathologist to perform the autopsy. In these cases, there may be charges for brain removal that would be borne by the family. There are no charges for research testing.

Where is the autopsy done?

Pathologists at the University of Michigan will perform the autopsy for patients living in Ann Arbor and the surrounding area. The Brain Bank Coordinator will help families of patients outside this area make pre-arrangements for a local pathologist to perform the autopsy.

When should pre-arrangements for an autopsy be made?

Planning should begin as soon as your decision is reached. Autopsy preparations must be made before the time of death. Your decision about brain autopsy pre-arrangements should be shared with immediate family members, medical caregivers, and your funeral director, to avoid last minute confusion.