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Autism Tissue Program
The Autism Tissue Program (ATP) has partnered with the Harvard Brain and Tissue Resource Center and is funded by Autism Speaks.1 Founded in 1998, the Autism Tissue Program (ATP) has been collecting and storing brains in order for science to conduct promising research on the body’s most complex organ.
The mysteries of the brain cannot be unlocked simply through genetic testing and MRIs. To explore how the brain is affected by autism “scientists must directly study the human brain...[f]or this reason, brain tissue is the most precious element in the neurological scientific community.”2 Unfortunately, this “precious element” is also extremely rare. To collect brain tissue specimens, the Autism Tissue Program collaborates “with tissue banks, organ procurement agencies, medical examiners, and the general public….”1 The ATP employs these services to locate samples from around the globe. The Autism Tissue Program is not only in need of brains from individuals with autism spectrum disorders, but also requires donations from typically developing individuals. The reason for this is simply that “if one finds an abnormality in the brain of a patient with Alzheimer’s disease, how can one be sure it is specific to that disease? Only by comparing the finding with non-Alzheimer tissue, both from normal people and from those with other neurologic disease, can the specificity be determined.”3
When some people consider organ donation, they think about the heart, liver, kidneys, and other organs that can be used for instant transplant to make an immediate difference in the lives of others. Some individuals can be hesitant to donate their brain, “because they’re only used for research – although this can also save lives by helping researchers find cures for disease.”4 Due to these feelings and several other sensitive issues surrounding brain tissue collection, many eager scientists are left without the means to conduct their research. To help put an end to the scarcity of this valuable resource the Autism Tissue Program is taking steps towards “making post-mortem brain tissue available at no cost, to as many qualified scientists as possible, in order to advance autism research and unravel the mysteries of this devastating disorder.”1 According to their overview,5 the Autism Tissue Program enhances brain banks functions by:
- Creating the most biologically relevant brain tissue repository possible
- Fully covering all costs associated with brain extraction and transfer tothe repositories at Harvard (US and Canada) and Oxford (UK).
- Providing scientific oversight of tissue distributions
- Overseeing and managing all tissue grants
- Clinically phenotyping and acquiring extensive medical data on all of the donors
- Providing continuing family support and communication to all of the donors
- Directly supporting researchers to facilitate autism research
- Maintaining a robust web based data management and secure on-line global interface system
- Developing and supporting ATP established scientific initiatives
- Actively providing public outreach and education
How the ATP Operates
Most brain banks operate differently from the Autism Tissue Program. According to a 2011 article in the scientific journal [i]Nature, most brain banks’ “personnel typically call the local coroner’s office each morning. If [an individual] is to be autopsied, they ask the office’s permission to contact the family and request the brain for research.”6 The Autism Tissue Program takes a more active approach by contacting individuals and families of potential donors through working with any “accredited tissue bank, organ procurement agency, or medical examiner that receives a family’s request to donate their loved one’s tissue to the program.”5 In the event of a donor’s death, a family member or health-care worker is urged to contact the ATP on their 24 hour hotline number.7 Once a family member contacts the hotline, the ATP will immediately notify the Harvard Brain and Tissue Resource Center to allow them to prepare for the impending donation, an advisor from the ATP or HBTRC works with the family to complete the consent process, and a courier is employed to carefully transport the donated brain tissue to the HBTRC within 24 hours.7
Understandably, this process can be painstaking for family members. The ATP employs a Clinical Coordinator that has a decade of experience meeting with families and providing bereavement support.8 The Clinical Coordinator will schedule a meeting with the family at their convenience, to learn more about the donor and also request “access to the donor’s medical records…. Without this information, the donated tissue loses its ‘context’, diminishing the potential of what can be learned from the donor and the donated tissue.”8 In addition to this initial home visit, the ATP is committed to maintaining relationships with all donor families through a private social networking site known as NING, which /CMS/admin/Assets/nationalautismnetwork/images/shutterstock_104507135.jpg connects “families of those who have lost a loved one and have committed themselves to [the ATP] mission.”9 This secure online community connects ATP families, informs, families of the progress being made through their donationand includes a forum so that families bonded by this unique experience can share among each other and the ATP staff.9 The ATP has also constructed the “Memories of Hope” page that includes the names of the donors, photos of the donors, and special tributes to these courageous individuals written by various family members.10
The study of the human brain has grown exponentially in recent decades. In the 1970’s, there were only three brain banks in the entire world, but now there are hundreds in the United States alone.4 The library of tissues collected by the ATP has helped to fuel research into genetics, stem cells, and digital imaging.11 The Autism Tissue Program has given qualified researchers more opportunities to “directly study the human condition on both a cellular and molecular level. In many cases, it is the only way in which key insights into our understanding of the human brain and autism can be gained.”5 Scientists hope to unlock the secrets surrounding autism through the direct study of brain tissue.