Q: Why should I consider donation?
We need Superheroes! The Autism BrainNet needs brain tissue from donors with autism, from the parents or siblings of people with autism, and from individuals unrelated to anyone with an autism diagnosis.
Autism creates daily challenges for people with autism and their families. The decision to register for brain tissue donation raises issues that are hard to think about while dealing with the struggles of therapies, schooling, and life planning. Contemplating the possibility of the sudden death of oneself or of a family member, particularly a child, is especially distressing.
However, brain research is the most likely route to the development of groundbreaking improvements in autism treatment. Scientists cannot conduct essential research to develop therapies that will improve the lives of millions of people with autism unless today’s autism Superheroes recognize the critical need for brain research and take the generous step of registering with the Autism BrainNet.
Although families face great personal pain when a loved one dies, many families have reported that the act of donation has helped them in their grieving process. The decision to register signifies that you are choosing to leave a lasting legacy to the autism community by participating in the discoveries that will improve the lives of so many families affected by autism.
It is essential for potential donors and donor families to discuss the possibility of brain tissue donation, and to decide whether registering with the Autism BrainNet is the right choice. These discussions are much less stressful when they occur in advance, rather than in the midst of a crisis, and will help ensure that a donor’s intent is respected and that any brain tissue that is donated will be of the greatest value to researchers.
Q: Why is there a shortage of brain tissue and how severe is the shortage?
Although brain tissue samples play a critical role in the quest to better understand and treat autism, the availability of quality brain tissue is extremely limited. Over the last three decades of autism research, fewer than one hundred autism brains have been studied, with the average sample size of five brains per published study. Today, with just four to six brain donations each year, there are simply not enough samples to perform the vital research that scientists are eager to do. These numbers are in stark contrast to disorders such as Alzheimer’s Disease where literally tens of thousands of brains have been studied. These studies have led to potential new treatments for Alzheimer’s Disease and our hope is that Autism BrainNet will accomplish the same for autism spectrum disorder.
Another impediment to the availability of brains for research is that the process of acquiring brain tissue at the time of death is more complex than the process for organ donation. Because brain tissue is used for research and not transplantation, it is not included on most organ donation registries.
Further, the logistics of getting tissues to a collection site within 24 hours of death, which is essential in the case of brain tissue donation, are often daunting. Because of the time restraint, only a small proportion of the currently available tissue meets all the criteria that researchers say is necessary to ensure accurate data. Prior registration, while not essential, helps to streamline the donation process.
We created the Autism BrainNet to address these issues. The donation procedures instituted by the Autism BrainNet will ensure that the donation process is as simple as possible for the donor families and that the brain tissue is collected in a way that will lead to optimal research results.
Q: Why do scientists need to study brain tissue to solve autism?
We have so much to learn about the complexities of the human brain and we know even less about how the brain of a person with autism is different. Postmortem studies on human brain tissue represent the only way that researchers can gain a deeper understanding of autism on the genetic, cellular, and molecular levels.
Many features of autism, including repetitive behaviors and difficulties in social interaction and communication are the result of how the brain is structured and how it functions.
Q: Why can't scientists use MRIs, EEGs, or other imaging methods to study brain tissue?
Currently, scientists can study the living brain by using imaging techniques and observing the electrical activity of the brain. Unfortunately, although research conducted using imaging techniques gives scientists some valuable information about brain structure and function, these methods only get us part of the way to the answers we seek. They do not allow scientists to see individual brain cells or study the very small molecular structures within the brain. Further, imaging techniques do not give scientists the information needed to understand the effects that genetic differences have on brain tissue. The only way to study brain structure and the structure of brain molecules is to examine the whole brain after death. These studies allow scientists to investigate particular pathways and look at the individual neurons of the brain to help understand both normal and abnormal brain development and activity. Similarly, the only way to see how gene expression occurs in different parts of the brain is to study the brain tissue itself.
Q: Does registering as a donor mean that medical treatment will be altered?
Absolutely not. Registering does not mean that a physician can or would alter the patient’s medical care or prematurely end the patient’s life.
Q: What are the various religious points of view on brain donation?
Culture and religion can have a profound influence on attitudes and opinions toward brain tissue donation. The vast majority of religions either support tissue donation as one of the greatest expressions of compassion and self-sacrifice, or favor the right of individuals to make their own decision about tissue donation.
The following is an overview of the positions of various religions with regard to tissue donation. We are unable to include perspectives from all faiths and cultures, and those needing additional guidance should discuss any questions with their religious leaders.
Buddhists believe that the decision to donate organs or tissues is a matter of individual conscience. While there is no written resolution on the issue, Reverend Gyomay M. Kubose, president and founder of the Buddhist temple of Chicago, said, we honor those people who donate their bodies and organs to the advancement of medical science and to saving lives.”
The Catholic Church has long supported organ and tissue donation. The decision to donate is seen as an act of charity, fraternal love, and self-sacrifice. The Church also specifies that in order to show respect for human life, respect for the Author of human life, and respect for the person who once existed, dignity and reverence are due to the remains of every being.
Although the Church of Christ Science takes no specific position regarding organ or tissue donation, most Christian Scientists rely on spiritual rather than medical means for healing. Organ and tissue donation is an issue that is left to the individual church member.
According to the Hindu Temple Society of North America, donation is an individual decision. Hindus are not prohibited by religious law from donating their organs.
Muslim scholars of the most prestigious academies have declared that organ donation is an act of merit and in certain circumstances can be an obligation.
According to the Watchtower Society, the legal corporation for the religion, Jehovah’s Witnesses do not encourage organ or tissue donation, but believe that it is a matter for individual conscience.
Judaism teaches that every dignity must be extended to the human body in death as in life. The Conservative Movement’s Committee on Jewish Laws and Standards has stated that organ donations after death represent not only an act of kindness, but are also a “commanded obligation” which saves human lives.
One of the provisions of the Israeli legislature’s Anatomy and Physiology Act contends that if a person specifies in writing that his or her body should be used for science, it is permissible to donate that body for medical education and research
The Church of Jesus Christ of Latter-day Saints believes the donation of organs and tissues is a selfless act that often results in great benefit to individuals with medical conditions. The decision to donate one’s own body organs or tissue for medical purposes should be made by the individual or the deceased member’s family.
While no one can speak with ultimate authority for Protestant Christianity because of the diversity of the traditions and the lack of a single teaching authority, most denominations endorse and encourage organ and tissue donation.
The Lutheran Church-Missouri Synod was the first denomination to encourage organ and tissue donation by adopting a supportive resolution and by distributing the largest number of organ donor cards ever through an issue of Luther Witness magazine.