Managing Editor's Note: On May 15th of 2007, I asked a similar question (HERE) on Huffington Post. Is a prenatal test for autism what Autism Speaks/NAAR has in mind with its unrelenting search for the genetics behind autism? Is this what it this huge charity is doing with the millions of dollars it has at its disposal (good word choice, yes?) I've made the analogy so many times: "What has knowing the chromosome that causes Down syndrome done for the Down population except cull the crop??"
By J.B. Handley
I'm not here to debate you on the ethics of either abortion or abortion after genetic risks of the fetus become known. Heck, those are two topics that are probably even hotter than debating the causes of autism.
What I am here to ask is what in the hell are organizations like Autism Speaks and individuals like Jim Simons doing continuing to fund genetic research for autism to the tune of hundreds of millions of dollars?
Reviewing the website of the Human Genome Project (HERE) reveals some insights that make the excessive funding even more baffling. Consider the current status of gene therapy:
"The Food and Drug Administration (FDA) has not yet approved any human gene therapy product for sale. Current gene therapy is experimental and has not proven very successful in clinical trials. Little progress has been made since the first gene therapy clinical trial began in 1990. In 1999, gene therapy suffered a major setback with the death of 18-year-old Jesse Gelsinger. Jesse was participating in a gene therapy trial for ornithine transcarboxylase deficiency (OTCD). He died from multiple organ failures 4 days after starting the treatment. His death is believed to have been triggered by a severe immune response to the adenovirus carrier."
So, gene therapy, the potential Holy Grail, has shown little progress in 18 years? Well, certainly scientists must have a basis for believing that "gene discoveries" within the field of autism will help our kids, no?
First, can we all agree on one thing? Can we all agree that if autism actually has any genetic origins those origins are from multiple genes and not a single gene? I sure hope we can. And, if we can agree on that, what does the Human Genome Project say about multiple gene disorders?
"Conditions or disorders that arise from mutations in a single gene are the best candidates for gene therapy. Unfortunately, some the most commonly occurring disorders, such as heart disease, high blood pressure, Alzheimer's disease, arthritis, and diabetes, are caused by the combined effects of variations in many genes. Multigene or multifactorial disorders such as these would be especially difficult to treat effectively using gene therapy."
It's worth repeating, since I think every parent can agree they are interested in effective treatment for their child: "Multigene or multifactorial disorders such as these would be especially difficult to treat effectively using gene therapy."
Is the emphasis and focus on funding genetic research for autism as stupid and unhelpful for our kids as it seems like it is? I sure think so.
Now, consider a different perspective on how genetic knowledge can be used. Consider what has happened to Down's Syndrome, a single gene disorder, since a simple test for the fetus became available. Has it led to better treatment for children with Down's Syndrome?
Consider THIS article about Down's:
"Only weeks before I had read a staggering statistic: 92 percent of unborn children diagnosed with Down syndrome are now aborted… If parents and even doctors so devalue the life of a child with Down, what prospects do they have in their lives and in the judgment of society at large?...Of course, the 92 percent abortion rate pertains only to those women having prenatal testing for disabilities…We have resolved in the courts, for the time being, the issue of abortion. It remains a woman's choice. But that choice is demeaned if communities devalue the life of its disabled."
So, here you go, I'm just going to say it. I predict, in the next 50 years, that the only output from the hundreds of millions of dollars spent on genetic therapy will be a test for pregnant mothers that will lead to some parents aborting their children because of a potential risk of autism.
It's a baffling, colossal waste of time, money, and focus.
J.B. Handley is co-founder of Generation Rescue and Editor at Large for Age of Autism.
Please send your link - your video, news clip or story can make a difference for families living with autism today.
The "Treatment" category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.