H. Ronald Zielke, Ph.D.Brain and Tissue Bank for Developmental Disorders, Department of Pediatrics, University of Maryland, Baltimore
The pathological study of autopsy tissue from autistic individuals is one of several important approaches needed for the understanding, treatment and eventual cure and prevention of autism. Understandably, issues of death and tissue donation are rarely discussed, if even considered, if a child does not have an immediate life threatening illness. Families fall into three broad groups with respect to potential tissue donation: (1) those that fully accept the concept of tissue donation, (2) the group that might consider tissue donation if properly informed or if actually faced with the decision at the time of death, and (3) those who are emotionally unable to consider or are opposed to tissue donation. Each of these groups can support autism research in their own way and professionals involved in a program of tissue donations must respond to, inform and educate each group accordingly. Group I is likely to preregister with a tissue donor program. The advantages of preregistration are that contact information, brief medical history, and consent forms are on file. Groups II and III comprise the largest number and are unlikely to preregister. It is important that group II is informed on a regular basis about tissue donation and whom to contact in an emergency. This is best done through support group newsletters and internet web sites.
Collaboration between an individual support group and NIH funded brain and tissue banks is the most productive means for the successful retrieval of autopsy tissue. The support group can utilize its contact with affected individuals to keep its members informed while the Banks have the trained personnel to arrange for the tissue recovery. An individual support group that is faced with the recovery of less than 10-20 cases per year probably can not build the infrastructure required to deal with IRB issues, funding, full time coverage, and retrieval, storage and distribution of tissue.
Issues of brain banking that have to be addressed is determination of brain sectioning and processing protocols, establishing a process for nationwide tissue retrieval, evaluation of research proposals and their specific need for brain tissue, verification of diagnosis, safe storage of tissue, inventory of tissue, securing control tissue, compliance with shipping regulation, and reporting of findings to the scientific and general community. Supported in part by NICHD contract NO1-HD8-3283.
Back to Agenda