Managing 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.
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