Jeffry Fawcett: "Participation by concerned citizens is an essential feature of scientific progress."
Managing Editor's note: This entry is from the "Your Own Health and Fitness" blog. Link is below.
By Jeffry Fawcett, February 3, 2009 in the Editorials blog
Last week, Robert F. Kennedy, Jr. and David Kirby published as article about autism on the Huffington Post. They were writing about how remnants of the Bush administration sabotaged funding for research on the relationship between vaccinations and autism. The actions of these members of the Interagency Autism Coordinating Committee blocked the allocation of funds specifically designated for such research by the Combating Autism Act of 2006. As Kennedy and Kirby point out, these men and women promote vaccination and some are on the payroll of the drug companies that manufacture vaccines. Each represents a Federal agency. Although there are civilian members of the Committee, the agency members outnumber the civilians by over two to one.
A major point of the article was that the vaccine-autism theory is now generally accepted as a legitimate subject of research in mainstream science. Of particular note is the increasing attention paid to this issue by many government agencies and programs, such as the CDC, Department of Health and Human Services, and EPA. There was a time when that wasn’t so. What made the difference was the activism of citizens supported by concerned scientists.
Click HERE to read the full post.
Autism, Dyslexia, Attention Deficit Disorder are all potential pitfalls when a child doesn't have proper child development. I think all families should be wary of this.
Posted by: konnie.teo | February 08, 2009 at 09:03 PM
Jack, Sue, We Shall Overcome - thank you - outstanding comments. How could it be said any better.
Jen - wide brush strokes for sure. When the open, insightful, curious scientists get caught in the crossfire, I hope they consider that the root cause for the sh$t storm is the fact that their public face is a line up of bobble heads. When the go-to docs all nod in unison, oblivious to disappearing children and ten thousand people marching on their behalf in the streets, everyone in a lab coat looks bad.
Posted by: Randy | February 05, 2009 at 11:14 AM
Jack I loved your comments about science and how everyday it really is. I remember seeing Jenny M. talking about her son Evan on some show one time and she referred to Evan as her science. So true!
I don't know much about the Act Up movement but I like the sounds of it. I honestly think a few broad strokes need to be painted in the autism/vaccine awareness campaign. Maybe some sky-writing, some banners, a sit-in at the ped headquarters in Illinois. Is there a national autism day? A lot of provocative art displays might make an impact. Some funny or not so funny videos on you tube-(maybe some songs on the stupidity of hep b to babies-Al Yankowvitch style). I think it's time for some of that.
Posted by: jen | February 04, 2009 at 09:45 PM
I have a researcher friend who told me the autism researchers are vying for research dollars all the time...but the only ones that get funded, are the ones who follow the agendas of their universities, and or the secretive ties to their sponsers...so the whole science thing, is no more..who can we trust, really? To me, a person who has no ties with universities, hospitals, or secret agendas...and good luck with that, because it doesn't really exist.
Posted by: Kathy Blanco | February 04, 2009 at 01:01 PM
Act Up did the heavy lifting, that's for sure. One of the differences for our community though is that we have children with intense needs at home - and face financial stresses at all times. The gay community was less hindered by these constrictions - and able to mobilize faster and with more ferocity.
Didn't it take an act of Congress for most of us to get to the Green Our Vaccines rally? Even a conference is difficult to attend.
But the Act Up model is superb, even where we need to tweak it for ourselves.
Posted by: Stagmom | February 04, 2009 at 11:16 AM
Kim I'm with you on this, the gay community and their friends, loved ones and those with sympathetic hearts stood in solidarity against the "science" at the time pointing fingers at the "sinners" spreading the "gay plague"
ACT-UP was one of the first organizations after the Vietnam era to create media moments by sit-ins, occupying buildings and creating stunts such as hanging huge 20x40 foot banners from iconic architectural structures insuring media attention.
However it took a committed group of people not afraid of pepper spray, jail, and sitting passively as scared and angry policemen drag, kick and throw them into a paddywaggon.
How may lives were saved?
This activism worked because those in the mainstream were educated to the numbers of those effected, they were educated to the fact that AIDS was spreading among the heterosexual population and they wanted to be protected.
Since there is no official "cause" of autism everyone is vulnerable.
It really is time to act-up and start throwing a few eggs. Who knows, it might just save a few lives.
Posted by: bensmyson | February 04, 2009 at 10:25 AM
Right on Jeffry!
Vaccine-induced autism should have always been only a medical issue to be solved within the medical community acting with haste at the first signs of trouble. But it's been more than a decade since those red flags went up and there is still ongoing mainstream medical resistance to admit the problem and the culprit behind it, the vaccine schedule.
The increasing rates of autism diagnoses came along with the ever increasing vaccination schedule. The medical community had the first suspicions that something could be wrong with vaccines and autism back in the mid 90's. What happened next and is still occurring today can only be described as a medical state of denial on a massive scale. The only answer given to us parents by the medical organizations has been ham-handed manipulation, obvious distortion of facts, and disgusting demonizing PR campaigns against those who don't agree with medical opinion who, adding insult to injury, just happen to be the children and parents directly affected by their mistakes.
The vaccine-autism connection obvious to us parents has become a human rights fight for justice. I am not an expert on what our exact current legal rights are concerning vaccines, maybe for the better, but the following rights seem obvious to me from a purely ethical perspective. If some of these are not our current rights we should make it a group effort to push for change. I am especially interested in number 6, due to our situation (most of us have already been damaged).To me, if we find out today beyond reasonable doubt that a kid was affected by vaccines 15 years ago, he should have the right to seek compensation.
1-We have the right to know what are the exact ingredients of medicines and vaccines recommended by doctors to be put into our bodies.
2-We have the right to know what possible side effects those medicines and vaccines may have and what are the exact chances of those happening. We have the right to request that these risks be independently evaluated.
3-We have the right to know what exact benefits can we expect from those medicines and vaccines, and what exact risks we face if we decide not to take them. We have the right to request that these risks be independently evaluated.
4-We have the right for complete access to all data collected during evaluation and safety analysis of all medicines and vaccines approved by federal authorities.
5-We have the right to request that evaluating agencies for medicines and vaccines are fully independent of manufacturers and medical agencies recommending the medicines and vaccines. We have the right to get full disclosure of all conflicts of interest by all researchers and doctors involved in those evaluations. We certainly have the right to rebate and outright reject their determinations when the studies are flawed and the conflicts of interest blatant.
6-We have the right to request and receive proper compensation by manufacturers or otherwise federal agencies when adverse effects occur after taking federally approved medicines or vaccines. Requests for compensation should never be set to expire, since adverse reactions may not be immediately perceived, may not be known at the present time, or may occur only after several years and may go unnoticed due to lack of proper long term evaluation.
7-Finally, we have the right to refuse taking any medicine or vaccine after informed personal evaluation of the benefits and risks presented to us. We have the right not to be harrased by doctors or agencies after deciding not to follow their recommendation.
Posted by: WE SHALL OVERCOME | February 04, 2009 at 09:59 AM
Well, as a scientist I hate to see science so frequently blasted here.
The problem is the corruption of science by greed. True science asks the next question and seeks the truth. We need this. We have science (biology is biology) on our side, truth on our side and we need real scientists to bring it out. But, by the way, "real scientists" don't need a degree. All you parents that are writing down the foods your children eat in logs, collecting testing data, etc, YOU ARE SCIENTIST. And you're doing a damn fine job of it. So, be proud of the science you're doing. Don't say, it is us parents against science. It isn't. You are doing the science.
I think the other fatal flaw society has made has been to put FAITH IN SCIENCE. That is disaster. Every scientific report etc. should be met with critism or at least thought. That's not happening. We've replaced religious with science and that is not the point of science. Science is not something to put faith in, but a means to discovering further truths about the world. A method
Posted by: Jack | February 04, 2009 at 09:39 AM
Sue - what keen observations you have made:
"I think the problem is that in true science, the goal is to find the truth--whatever that is. Whereas in "autism science" (and most other health/safety/environmental controversies) the goal of the research is often to prove that what the researcher (or funding entity) thinks is (or wants to be) the truth, is indeed the truth."
How did it come to this??? Science is supposed to be an investigation...so let's investigate already! Independent research, anyone?
Posted by: Julie | February 04, 2009 at 09:03 AM
Re: Jen's comment about scientists. In my observation, many, many scientists welcome data, comments, insights and even criticisms from non-scientists. The peculiar disdain for non-professional observations, comments and criticisms of their science seems fairly limited to researchers involved in this and other medical/health/environmental controversies.
I think the problem is that in true science, the goal is to find the truth--whatever that is. Whereas in "autism science" (and most other health/safety/environmental controversies) the goal of the research is often to prove that what the researcher (or funding entity) thinks is (or wants to be) the truth, is indeed the truth.
That is a very different agenda which requires ignoring inconvenient information that doesn't support the desired hypothesis--and results in irritation when the "non-scientists" keep pointing out the contradictory data, analysis errors, methodological problems, etc. One of the saddest realizations I have come to as a result of investigating this controversy is just how much "peer-reviewed science" is actually agenda driven, rather than truth-seeking.
Posted by: Sue | February 04, 2009 at 08:23 AM
This is how the gay community got HIV/AIDS research and prevention into the mainstream. It works. Our children are being discriminated against by the medical complex - they get no treatment, no acknowledgement of the degree of their condition, and on top of it, derision from the men and women who took oaths to heal.
Enough.
KIM
Posted by: Stagmom | February 04, 2009 at 06:39 AM
Jeffry Fawcett - I don't know you but I'd love to shake your hand!
Thank you for saying some sane words about an issue that is near and dear to my heart. It is also a scientific issue and your words that grace the beginning of this blog-
"Participation by concerned citizens is an essential feature of scientific progress"
...have been an essential and integral part of the paradigm shift that has taken autism from a strictly behavioral diagnosis with no known cause and no known cure to a disorder/disease that links both gut and brain and interestingly, are the clues to treatments (environment/vaccines = mercury, aluminum, viral, bacterial, and fungal infections.
The love of our children is part of that scientific progress.
Posted by: Teresa Conrick | February 04, 2009 at 12:09 AM
I totally agree with you. Participatory research or participatory science sounds good to me. But to many of the scientists, I think participatory science would be seen as threatening science. They really seem to think they have a monopoly on smarts.
Posted by: jen | February 03, 2009 at 10:25 PM