Online Quizzes: What Do You Know...About Vaccines?
Dachel Media Review: Camps, Crops, Campaigners

Please HELP Restrict Autism CARES bill from Funding Abortion Research

Restrict Autism Cares AbortionManaging Editor's Note: This post deals with a number of important and politically sensitive topics.  Please use Twitter to reach ranking D's and R's (see lists at end of post.)  Tweet as many decision makers and leaders as you can and share their "@" in a comment so we can follow. A sample Tweet could simply read, "Restrict Autism CARES S2449 Bill from Funding Abortion.  Use Hashtag #RestrictAutismCARESAbortion.    Pope Francis @Pontifex is on my list.  Those who have autism today deserve more than Autism CARES (formerly known as Combating Autism Act) offers. And filling the coffers of genetics researchers and orgs who promote and fund them for what essentially boils down to eugenics should be anathema to all of us, regardless of politcal or social point of view. Thank you.  Here is a link to this post you can copy and share too - Help Restrict Autism CARES Bill From Funding Abortion Research.

By Kevin Barry

There can be no dispute that autism is expensive to society.  One recent estimate placed the cost of autism in the United States at $236 billion dollars per year.   

Is abortion one of the methods the Federal Government wants to use to lower the astronomical 1 in 68 autism rate in the United States and reduce the cost of autism?

The focus on genetic research with respect to autism suggests so and this is not unprecedented. As a consequence of prenatal genetic testing, more than 90% of fetuses which test positive for Down Syndrome are aborted.  Please help us make sure research which could lead to selective abortion for autism is not funded by taxpayer dollars.  

In May 2008, the Interagency Autism Coordinating Committee (IACC), the organization created by this same Autism bill which has been recently renamed Autism CARES, made it clear that IACC sought the same 90% “preemption” figure for autism as Down Syndrome.  The articulated goal was to “develop interventions for children at risk for ASD with the goal to preempt autism in 90 percent of younger siblings.”    (page 156)

If IACC’s preemption goal is not largely related to abortion, why is the intervention goal targeting younger siblings?  Genetic research leading to selective abortion should not be part of the federal autism prevention strategy.  

A recent (6/10/14) fundraising email from Autism Speaks’ President Liz Feld promoting their AUT10K program also raised serious concerns about the goals of their research agenda, which has always mirrored the federal government’s agenda.   In the email, Ms. Feld writes:

Unlike previous genome studies, which have traditionally focused on just 2% of DNA codes, the Aut10K program is taking aim at the entire human genetic sequence. And it's already yielding some interesting data. For instance, we are learning that:

- It is possible to identify autism-related "markers" in individuals with autism; 

- Those markers are leading to the understanding of various kinds of "autisms".

- Mutations that arise in sperm, eggs and very early prenatal development can play an important role in autism.

- By studying the complete genome, we can help parents identify other medical conditions that can be hard to diagnose in children with autism.

What type of intervention is Autism Speaks targeting for “very early prenatal development”?  Very early prenatal development is the period when abortion is legal. Is Autism Speaks suggesting “drug discovery” for a first or second trimester fetus or some other intervention?

Prenatal genetic blood tests are developing rapidly.  Much of the research focus by NIH, and by Autism Speaks, is focused on prenatal development.  There are already multiple prenatal tests being marketed to pregnant women which claim to be able to predict autism.   These recent tests are simple, non-invasive blood tests, not the more invasive amniocentesis tests of years past.

Genetics research has long been regarded as a double-edged sword, which could be used for drug development or for abortion.    Almost all ASD diagnoses involve multiple genes.  The Human Genome Project states that “multigene or multifactorial disorders … would be especially difficult to treat effectively using gene therapy The motives of continued genetic research should be the subject of a full Senate HELP committee hearing.

One genetic test being marketed in Australia uses research developed by the NIH, Autism Speaks and the Simons Foundation Autism Research Initiative to provide a “predictive ASD test”:

“A genetic cause for autism has been long sought with many genes implicated in the condition, but no single gene has been adequate for determining risk. Using US data from 3,346 individuals with ASD and 4,165 of their relatives from Autism Genetic Resource Exchange (Autism Speaks - AGRE) and Simons Foundation Autism Research Initiative (SFARI), the researchers identified 237 genetic markers (SNPs) in 146 genes and related cellular pathways that either contribute to or protect an individual from developing ASD.”

The private sector companies which sell genetic tests will claim that they are only designed to be used on living children, but they will have little control over whether, in practice, the tests will be used for prenatal genetic counseling. 

Genetic researchers may make similar claims, but these researchers will have little control over whether the output of their research will be used for prenatal genetic counseling rather than drug discovery.

Autism advocacy and research groups may make similar claims, but they have little control over whether or not the private sector will use the research results for prenatal genetic counseling.

Congressman Bill Posey (R-FL), in an op-ed published in The Hill on June 13th, detailed the multiple failures of federal autism research over the past 8 years.  The Autism CARES bill currently under consideration, unless materially amended, calls for status quo research over the next 5 years.  The primary success of the failed autism gene hunt is to provide the raw material for prenatal genetic counseling. 

 "At a recently called House Oversight Subcommittee meeting, Dr. Insel admitted that after eight years and spending $1.7 billion, the programs developed in the CAA have failed to determine the causes of the enormous increase of the prevalence of autism, failed to prevent a single case of autism, failed to produce any new biomedical treatment for autism, failed to materially reduce the age of diagnosis of autism, failed to ensure appropriate medical care for the co-occurring health problems faced by many with autism, failed to ensure even basic safety protocols for people with autism who "wander", unfortunately some to their deaths, and overall, failed the families facing autism—most especially the approximately one-third of families with children most severely affected by autism, who literally cannot speak for themselves, and whose severe disabilities portend one of the largest unfunded federal fiscal liabilities of the 21st century."  (From The Hill blog HERE.)

What can you do to help stop federal funding of genetic research which could lead to selective abortion?

Act now, today, tomorrow and Wednesday, because the Senate HELP Committee meets to discuss the Autism CARES status-quo-is-good-enough bill Wednesday June 25th at 10AM. 

Ask the HELP Committee to Amend the Autism CARES bill to prohibit funding for genetics research unless the researcher applying for funding can certify that the research output could not possibly be used for a prenatal genetic test.

Ask HELP Committee leaders Senators Harkin and Alexander to hold a full committee hearing on the Autism  CARES bill to consider such an Amendment.

Tweet “No Abortion 4 Autism! #AmendAutismCARESBill” with a link to this article to @SenatorHarkin and @SenAlexander .

Ask each of the individual Senators on the HELP Committee to propose such an Amendment.

For example, tweet “No Abortion 4 Autism! #AmendAutismCARESBill” with a link to this article to @SenRandPaul and @ SenatorTimScott, asking them to propose an Amendment.

If the CARES bill passes, it will be law until 2019.  Prenatal genetic testing is expanding rapidly today and will certainly be more prevalent over the next five years.  Please help stop taxpayer support for such research.

Not only may this status quo research lead to selective abortion, it also is a tremendous waste of taxpayer resources.  The recent GAO report said 84% of research funded by IACC was redundant.  Most of this redundancy was genetics research, as IACC spent money on genetic research vs. environmental by more than 7:1.  (Read here.)   There is little reason to expect IACC to spend money over the next 5 years more wisely than they spent money the past 8 years unless Congress amends to the bill to restrict the wasteful spending.

Principles which should be included in the Autism CARES Amendment:

Abortion is not a treatment or prevention strategy for federal funding related to autism. 

No funds authorized or appropriated by the Combating Autism Act shall be expended for any research project which could potentially be used in prenatal genetic testing.  Prenatal genetic testing could lead to selective abortion, as is currently the case with Down Syndrome. 

All research funding by the Combating Autism Act must certify at the time funding is applied for that the research output could not possibly be used in prenatal genetic testing.  If proposed research cannot certify that it cannot be used for prenatal testing, it is not eligible for federal funding. 

Any institution where federally funded research is conducted whose output is later found in violation of this section of the Act shall reimburse the federal government 10 times the amount of funding received under the Act.

Kevin Barry is a board member of the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) and is a founder of the Universal Family Church.

Democrats by Rank

Tom Harkin (IA)   @SenatorHarkin
Barbara A. Mikulski (MD) @SenatorBarb
Patty Murray (WA) @PattyMurray
Bernard Sanders (I) (VT) @SenSanders
Robert P. Casey, Jr. (PA) @SenBobCasey
Kay R. Hagan (NC) @SenatorHagan
Al Franken (MN) @alfranken
Michael F. Bennet (CO) @SenBennetCO
Sheldon Whitehouse (RI) @SenWhitehouse
Tammy Baldwin (WI) @SenatorBaldwin
Christopher S. Murphy (CT)  @ChrisMurphyCT
Elizabeth Warren (MA) @SenWarren

Republicans by Rank  @GOPHELP

Lamar Alexander (TN)  @SenAlexander
Michael B. Enzi (WY)  @SenatorEnzi
Richard Burr (NC) @SenatorBurr
Johnny Isakson (GA) @SenatorIsakson
Rand Paul (KY) @SenRandPaul
Orrin G. Hatch (UT) @SenOrrinHatch
Pat Roberts (KS) @SenPatRoberts
Lisa Murkowski (AK) @lisamurkowski
Mark Kirk (IL) @SenatorKirk
Tim Scott (SC) @SenatorTimScott

Comments

Interestingtimes

Watch Scienceblogs squirm as they navigate between pesticides etc (environment) and eugenics. They really won't win. The silence is deafening.

John Stone

Greta

I don't think this is very much an abortion issue, it is a eugenics issue but it is one with a complication: autism is not determined by genes. Even the big gene studies which provide employment for hundreds of starving, useless scientists only assess "susceptibility". What is disturbing here is not the real science but that people will be persuaded to take actions on the basis of bogus science, first stop being the politicians. But, as I have pointed out, how long at the present rate - if nothing is done - before virtually every child develops autism? Coming very soon now, I suspect.

Greta

I think Kevin Barry is over blowing this to rally anti-abortion sentiment. It is not that I agree with where the money is being spent because they've been looking for a gene or gene marker for years. I don't believe there is a definite marker for autism (that if you have it you will get it.) I think there is a genetic predisposition to autism that is triggered by an environmental event, e.g., vaccine overload, mercury, petrochemical,etc.(what I think most people on this list think or maybe I'm wrong.) Thus, I am not worried about the possible abortion issue but that tons of more money will be spent searching for something that isn't there. Frankly, if this flips into an abortion issue count me out.

Rae

Just one more opportunity for ignorant, power-crazed doctors and scientists to play God. I hope nobody buys into it.

JerseyGuy

I'm afraid Kevin Barry is onto something. Autism is apparently caused by a combination of genetic and environmental factors. Some people have a genetic predisposition (a vulnerability to vaccines and heavy metals) but they won't develop autism without the environmental insult (vaccines). If, as Dr. Richard Deth has suggested, we had a test to detect that genetic predisposition, we could grant those who tested positive a vaccine exemption, and autism rates would go down. But that would involve admitting that vaccines can cause autism in some individuals, which the medical establishment will never do. So expectant mothers whose fetuses test positive for the "autism gene" will be told that their child will develop autism, and most of them will choose to abort. Now, whatever our opinions about abortion, we can all agree that it's terribly wrong to give expectant mothers misinformation about the children they are carrying. But this will be the "solution" to the "autism problem".

And here the neurodiversity movement, which is wrong about so many other things, is frighteningly right. Yes, this genetic research, which promises "treatment" for autistic children, in fact aims to eliminate them. So perhaps we should reach out to the neurodiversity people and alert them what they haven't yet quite grasped -- that the CARES Act is a trap, and that they are being duped and betrayed by the people who profess to "care" about them.

Rita Joseph

It's wise to be skeptical about claims by Autism advocacy and research groups that they are able to separate their good intentions from the private sector' subsequent use of their research results for prenatal genetic counseling.

We have seen the devastation visited on the Down's syndrome community with prenatal testing and follow-up abortions.

It would appear that prejudice against children with Down’s syndrome is now so deeply entrenched and approved in our society that Dr. Michael Greene, Chief of Obstetrics at Massachusetts General Hospital, could insist recently that his responsibility is "just being able to reliably identify pregnancies that are at risk for abnormalities".

With utter unconcern, he asserts:
“What, if anything, the patient wants to do, is up to them.”

This comment is disrespectful. Every doctor has a human rights duty to speak and act with respect towards the mothers of these children at risk of abortion and towards all members of that group of human beings who are identified as having Down’s or any other condition.

Decisions to abort a child because she/he has Down’s syndrome are treated under international human rights law not as idiosyncratic, personal choices but as human rights failures.

The growing of prejudice is an unintended consequence of the emphasis on the “choice” to prevent births to this group of children with prenatally detected Downs.

The popularity of this discriminatory and deeply offensive “choice” impacts gravely on the survivors.

It is difficult to live confidently and comfortably in a society where some 90% of mothers make the “informed choice” to prevent births of their children explicitly and openly because their children have been identified to have the same condition that the survivors are now living with.

‘Choice’ is no excuse for prejudice.

Sickened but it shows they are desperate

Seriously, why isn't there a petition against this stuff? Why did they petition against a wandering cause and yet none of the journalists/media types are against this??

False scientists make me laugh

It will be interesting to see how the neurodiverse respond to Google and Autism Speaks interest in genetic research. Maybe they'll realize that even worse than saying autism is a result of environmental influences, is this genetic interest in culling.

Eileen Nicole Simon

Neuropathology should be the focus of research, not gene statistics.

Language handicap is the cause of disability in autism. Brain damage caused by asphyxia at birth was reported in many research papers during the 1960s. Nuclei in the auditory pathway were prominently injured.

How do children learn to speak??? Evidence is far stronger for auditory system injury than genes that might somehow cause autism. Brainstem auditory nuclei are vulnerable to toxic substances as well as asphyxia. Blood flow and metabolism are higher in the auditory system than anywhere else in the brain.

I see Elizabeth Warren on your list of people to contact. I have received only form letter responses from her, my other senator, Markey, my representative, and President Obama. I can’t believe any of them care about autism. They may believe that just throwing more money back to the “experts” is all they can do.

I am grateful to Rep Bill Posey for his post on “The Hill.” Many of the responses to his comments are bizarre, and clearly reveal the taunting techniques of vaccine defender cyber bullies...

Robin P Clarke

John and Greg, I don't think I need to explain to you that just because some science/tech doesn't actually work that doesn't stop it being potentially very profitable. Just imagine the money to be made by "researching" the would-be genetics, then developing autism-risk "tests" and then administrating them to millions, let alone the resulting big industry of abortionists to follow.
Meanwhile this new corporate tentacle will be able to pretend to be heroically at last "doing something" about the autism tragedy.

Further in this case, there promises to be an even bigger tragedy. I argued 32 years ago http://cogprints.org/5207/ that as well as many environmental factors there would be MANY genes contributing to autisticness, and that they would be precisely the same genes that in normal levels cause raised IQ and at just below autistic levels cause genius. So aborting all the high-antiinnatia-genes babies would be a great way to dumb down the McPopulation even further, getting rid of both the geniuses and the other brightest sparks.

But I suggest the grand vision of profitability is likely to be brought to a halt anyway by a growing public understanding of how catastrophically flawed is the entire system of "expertise" and "education" and "peer reviewed" "authority" underpinning the current regime of charlatanism that is the greed-driven corporatised illness industry. Watch my space.

Sickened but it shows they are desperate

The fact that they changed the name from Combatting Autism is telling. Insel and all have wasted billions on this unfolding tragedy. Oh, and CARING is the last thing this very early predictive testing action is about.

Sickened but it shows they are desperate

Considering that vaccine pre-clinical studies DO NOT STUDY FOR REPRODUCTIVE EFFECTS, this is a sick, distracting form of action. Am I wrong or did the Australian autism- test labs develop some kind of "autism prenatal test" that probably is used to "screen" and abort by some already?
I believe as others said, that this folly will not last for long but I am sad to say that I am not surprised since the costs to autism are rightly being reported now as being quite high. In fact, this shows us that we are close to winning and close to them admitting that the problem is out of control. This would seem to be the final (pathetic and drastic) attempt at controlling the situation.
Oh and as someone mentioned, we neednt wonder about the purpose of the testing when they mention it is for "preempting autism in younger siblings." it is for abortion.

Jeannette Bishop

Unless one defines eugenics as outright targeting of certain genes for elimination, the current course is eugenics. The very fact that the "scientific/medical community" assumes that any condition is genetic before knowing which genes are at work just because it appears to be inherited is eugenics at work. Or possibly more accurately, it is avoidance of responsibility for the harm done by environment or to make changes to protect those in harms way, i.e. if the environment hurts a few, those that contributed to that environment are not responsible to change course or make reparation when known risks are taken because the harmed are "genetically defective," "genetically predisposed," or they have bad parents, or whatever. It's all tainted with hints of eugenics, or the selling out to the agendas of the few who don't intend to let ethics get in the way of their short term (or maybe long-term) convenience, profit margins, assuaged consciences (if they have any that aren't seared to the point of non-operation), whatever they want.

As long as data showing great risk of harm from government "recommendations" is sitting locked away and kept from leading to ethical action to change course and protect those they are labeling as "genetically predisposed," I can't help but see any funding put under the direction of these institutions as funding eugenics or something just as immoral. Indeed, if it is true that certain members of the CDC knew of great risk of harm from prenatal flu vax and then recommended that pregnant women get H1N1 vax while they are at it...and apparently certain interests are keeping Congress from publicly airing how this is the case...

I can't support any continuation of the CAA, now being changed to a name that suggests permanent funding of "caring" inaction or worse, nor the continued funding of any federal "health" agency.

Not an MD

@ Greg,
I don't think what Kevin has written is even slightly overblown. Of course the genetics path will lead to selective abortion. People are very scared about the possibility their offspring will develop autism. This genetic testing is a distraction that will be used at every possible opportunity until it reaches its obvious conclusion. We live in an age where parents-to-be are happily choosing to do pre-genetic testing (taking one cell of only eight of a lab created embryo) to determine the sex of an embryo prior to implantation in the uterus. No one seems to be thinking about what removal of that cell can do to harm an embryo, or newborn, or grown child. Science is being performed today in a very thoughtless manner.

Similarly, how is anyone to know if the embryo they are planning to destroy or fetus to abort (due to a few genetic mutations seen in a handful of children with autism) is genetically defective due to de novo mutations from a vaccine (or two or three, etc.) one of its parents previously received? Who is studying the genes an unvaccinated baby has, and testing that same baby again after one or more vaccines are given to him/her, to determine what has changed genetically subsequent to vaccination? Cart-before-the-horse (i.e. complete baloney) science should not be tolerated. Seems like the way to eliminate autism is to abort all embryos and fetuses with any unwanted mutations. This is what is being offered to us, and if we permit this, it will be the only "science" we ever see in the matter of autism.

Greg

Kevin, with all due respect I think the concern that autism genetic research will result in eugenics is a little overblown. Not because they are decent people and will never pursue this end, but due to the simple fact that autism is not a genetic condition. Think about it: how long have they being going at the genetic angle only to now concede that genetic mutations alone cannot satisfactorily account for autism, and it's more a case of biological pathways gone awry? Their genetic research game has become nothing more than a grand distraction.

Greg

John Stone

I wrote when this came up five years ago that there were unlikely to ever be credible biomarkers for autism in pregnancy. It was troubling then not that it was likely but that Simon Baron-Cohen was talking about it, and it is just as troubling that Liz Feld is now.

http://www.ageofautism.com/2009/01/simon-baroncohen-thinking-differently-about-autism.html

It could of course be within the next 15 years - the way things are going - that we will be able to predict that every single foetus is an autism risk. This is sick stuff and complete misdirection. I don't know why Feld is there - she looks like a smart lady - but she does not represent anything I like or approve of.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)