Eugenics, Fear, and Pain
Published May 18, 2009 @ 12:04AM PT
The new neurologist has requested that my son have some genetic testing done, specifically for the PTEN and MECP2 genes, both of which have been connected to autism (and the latter to Rett Syndrome). Which means, there's been some evidence linking these genes to individuals on the spectrum, but nothing definitive.
And this is one reason why, according to some, genetic testing is a so-to-speak "waste of time" due to the amount of resources that are expended on such studies. Further, as the results do not translate readily into treatments and, even more, solutions, some have suggested that we really ought to focus on research that leads to, well, treatments and solutions. Another concern about genetic research is the possibility that a test to detect autism---prenatally---will be developed. About 85% of parents who find out that they are expecting a child with Down Syndrome currently decide not to have the child: What would happen if parents found out that their child was going to be on the autism spectrum?
Genetic research on autism was one of my main focuses when I started writing Autism Vox (three years ago---time is flying). And one question I quickly encountered was the possibility of a prenatal genetic test for autism. A recent Newsweek article entitled Erasing Autism: Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried? looks specifically at recent genetic research on autism via a portrait of Ari Ne'eman, the President of the Autistic Self-Advocacy Network (ASAN). Reporter Claudia Kalb hones in on the question of genetic research:
When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."
The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?
Fear and pain: Kalb singles in on these as why parents might choose not to have a child who they knew in advance might have some kind of disability.
There's currently no prenatal genetic test for autism; as research into the genetics of autism continues, there's been plenty of speculation about such a test. As Ne'eman notes, the notion of a prenatal test for autism is haunted by the specter of eugenics. Should such a test exist, what would parents choose?
Writing as someone who is a parent, and whose son is on the moderate to severe part of the autism spectrum, I can say I understand why parents might fear to have a child with disabilities like my son, and why a parent can get to the point of wishing they'd do anything to help their child and, as Kalb writes, "free their children from isolation and pain." But never once have Jim and I wished that our child "had been better off not born," and I'm not writing that as a starry-eyed sentimentalist. Charlie has been through a lot and Jim and I, too, in our daily efforts to help him and to keep him with us. It's a very personal matter, but I can say that our lives have only been better because of Charlie.
Jim and I met Ari Ne'eman a couple of years ago, when Jim was putting together this conference. I've been glad to have been able to speak to Ari and to watch his advocacy work grow and evolve, and I've been fortunate to meet his mother, Rina Ne'eman, who is interviewed in the Newsweek article. In regard to accusations by critics (hello, we know you're thinking of saying it) that her son is "not really....autistic," Rina Ne'eman states that "'people who see Ari today have no idea where he's been.'" As a mother, I can only say the same thing for my son, who's got many a challenge on his plate---many different ones from those Ari has, but challenges are challenges.
Charlie, too, has come a long, long way. And I think we need to make sure that kids who might start out with "issues" and, yes, "problems" have every chance they can to show us just how much they can do, and how far they can come.
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Comments (23)
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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Good post. I read that Newsweek article. I thought it was pretty good too. I liked that.
Posted by Fleecy B. on 05/18/2009 @ 03:09AM PT
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Everytime I read one of the "I don't want no cure" posts on the Hub I roll my eyes. I guess it's because I don't see it as a brain transplant but a lessening of the symptoms. If your sensory system didn't kick into overdrive the moment you went into the mall or a crowd for example. Thinking of it as more of wearing a pair of glasses, or a hearing aid, nothing has truly changed but now you can manage easier but your brain works just the same as it always did. Everytime you even teach your child to put on socks you are "changing" their autism, changing the brain using its neuroplacisity, changing who they may or may not be. So, do you do nothing or try to do something??
Until such day abortions or genetic modifications are legislated as being mandatory for every parent, I refuse to get dragged into the debate. I happen to like "choice" and I'd rather that those that don't want handicapped kids didn't have them and a train wreck happen.
I am also curious whether or not they can tell the difference between NLD, Asperger's and Autism using genes. Which would shorten the spectrum and I am hoping that happens with the DSM V. My Dr says anyone can be diagnosed with anything under the IV.... over the last couple of years in autism-land, I'm starting to believe that to be true. IMO, The spectrum is too big and too variable. To claim my elders autism is the same is my youngers and that my elder has the right to speak for the younger who cannot.... is just WRONG.
Personally, I refused all genetic testing.... and to this day I do not regret that decision. Doesn't mean I don't wish my youngest son's autism was as mild as his elder bro's.... that's part of being human.
S.
Posted by Fw2 farmwifetwo on 05/18/2009 @ 05:37AM PT
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@Fw2 Farmwifetwo. "Everytime you even teach your child to put on socks you are "changing" their autism, changing the brain using its neuroplacisity".
@Fw2 Farmwifetwo. Neuroplasticity is exciting news. I agree with your statement and these are my reasons. Neuroplasticity is about normal brain functioning (learning and adapting to our environments). Throughout our lives our brain changes so that we can learn and adapt as a survival mechanism. Also neuroplasticity is the way the brain gains new knowledge and learns from fresh experiences.
INTRODUCTION TO NEUROPLASTICITY
http://www.memoryzine.com/neuroplasticity.htm
Since 1996, Douglas J. Herrmann Ph.D. and the PMI staff have been dedicated to memory improvement, memory training and memory fitness. The research and development for the Memory Works Programs was funded by grants from the National Institutes of Health.
"Rather, the ongoing process of synaptic reformation and death is what gives the brain its plasticity - its ability to learn and remember, to adapt to its environment and all the challenges brought with it, to acquire new knowledge and learn from fresh experiences - throughout an individual's lifetime. Groundbreaking new research suggests that, beyond modifying pathways and forming new ones between existing neurons, the human brain is even able to generate entirely new brain cells".
Ask the Expert: What Is Neuroplasticity?
http://www.brainline.org/content/2009/02/ask-expert-what-neuroplasticity.html
Celeste Campbell, PsyD Dr. Campbell is a neuropsychologist in the Polytrauma Program at the Washington, DC Veterans Administration Medical Center. She completed a postdoctoral fellowship in Rehabilitation Neuropsychology at National Rehabilitation Hospital and has served as adjunct faculty for the George Washington University Graduate Certificate Program in Special Education and Traumatic Brain Injury.
In addition, we are now learning more about neurogenesis - the actual generation of new brain cells. Recent research has demonstrated that neurogenesis does indeed continue into and throughout adult life, although only in specific areas of the brain. Researchers are exploring ways to identify those areas of the brain where new cells are developing, to discover how to promote or inhibit neurogenesis, and to learn how new neurons may become part of the working brain. The hope is that this information will ultimately help people better recover from brain injury.
Adult Neurogenesis* (Article: Brain Briefing by SfN)
http://web.sfn.org/index.cfm?pagename=brainbriefings_adult_neurogenesis
"Research over the last decade has produced growing evidence that the adult human brain creates new neurons, a process known as neurogenesis. Already research has:
Identified areas of the brain where neurogenesis is evident.
Discovered the processes that may promote or inhibit neurogenesis.
Offered a glimpse of how new neurons may assimilate into the working brain".
*Information about Society for Neuroscience (SfN)
The Society for Neuroscience (SfN) is a nonprofit membership organization of scientists and physicians who study the brain and nervous system.
Since inception in 1969, the Society has grown from 500 members to over 38,000. Today, SfN is the world's largest organization of scientists and physicians devoted to advancing understanding of the brain and nervous system.
Posted by L I on 05/18/2009 @ 12:07PM PT
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I agree with your thoughts on genetic testing and abortion, and not limiting others to their choices. I, too, am curious if specific ASDs have different gene markers--I only ever see them referenced as 'autism', as if it's all one thing. I was a hyperlexic kid and am being tested officially for Asperger's starting next week; my experience is qualitatively and quantitatively different than someone who is nonverbal and possibly MR (having worked with a number of kids on the spectrum who carried MR diagnoses, most of whom were non or limited verbal, I seriously doubt the correctness of that label in many cases).
Posted by Ali ... on 05/22/2009 @ 02:12PM PT
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I'm sure that your neurologist will have an interesting response to the question: what's the point FOR CHARLIE of genetic testing?
On parental choice and testing: While increased parental choice, like individual choice more generally, is a value, it's also a value that is implemented in a world that both fears disability and rushes to treat scientific knowledge, including the results from genetic and other tests, as definitive in ways in which it is not. During the heyday of eugenic sterilization and segregation, falling below 70 on an IQ test was, in many jurisdictions, a one-ticket to a life of institutionalization for many children, just as screening positive for trisomy 21 is, as Kristina points out, a one-way ticket to termination for many. Neither of the conditions that such tests diagnose, "feeblemindedness" and Down syndrome, are heritable, although one of the major justifications for the testing in both case was to prevent "degenerative breeding" and the infection of the gene pool. In both case, parents make individual decisions, ostensibly with the best intentions, and in both cases, many lives that likely would have gone significantly better take a path for the decided worse. As genetic tests and/or prenatal screens for autism-linked conditions develop, we'll see termination rates like those for Down or higher. What those tests and screens are unlikely to reveal are levels of severity, just as they don't for Down.
Science and medicine do improve our lives in many ways, even in such cases. What's less clear is that they improve the lives of those most directly affected by their mixtures with individual and parental choice. The confusion typically expressed in the "had been better off not born" talk that one often hears in connection with disability shows, I think, a kind of failure of imagination and a fear of disablement.
Posted by Rob Wilson on 05/18/2009 @ 07:27AM PT
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Great post Kristina. You summed the issue up very well. I think that parents would never feel hopeless if good services were available. With great evidence based therapies, community supports, healthcare assistance, school support, and a society that values those with disabilities, autism would not lead to fear.
Research for therapies and access to them has been so underfunded that we really have no idea what potential lies ahead. If parents want options then funds need to be dedicated along these lines to the extent that they have been funneled towards a cure.
Posted by E-Advocate E on 05/18/2009 @ 07:53AM PT
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I encourage you to visit www.specterforthecure.com to see how together, we can unstrangle the cure and medical innovation with Sen. Arlen Specter’s help. Call/write your senator about making the CAN Act a part of health reform.
www.specterforthecure.com
Posted by Nicole Morris on 05/18/2009 @ 08:45AM PT
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In this discussion I thought it might be important to look at genetic testing. What is important to know.
UCSF is one of the best hospitals in California. Alpha Fetoprotein is the blood test done to screen for genetic problems in pregnancy. Note the following information:
1. Recommended by the state (detecting genetic problems saves
the state money).
2. If the test is positive the emphasis is on genetic abnormality
not birth defect. (The emphasis of the test is on genetics).
3. You have an option to do the testing. The purpose of these
test is to help you make a decision about terminating the
pregnancy.
4. The rate of detection for women under 35 is about 60 percent for Down syndrome and 60 percent for trisomy 18.The detection rate is higher in women over 35 years of age.
University of California, San Francisco About UCSF UCSF Medical Center
Reviewed by health care specialists at UCSF Children's Hospital.
Last updated May 8, 2007
http://www.ucsfhealth.org/childrens/medical_services/preg/prenatal/afp.html
Prenatal Diagnosis Alpha-Fetoprotein (AFP) Screening
What is expanded alpha-fetoprotein (AFP) screening?
An expanded AFP screening is a simple blood test. It is recommended by the state of California for all pregnant women and can detect if they are carrying a fetus with certain genetic abnormalities such as:
Open neural tube defects (ONTD), such as spina bifidaDown syndromeChromosomal abnormalities, such as trisomy 18Defects in the abdominal wall of the fetus AFP is a substance made by the yolk sac of a fetus that enters the amniotic fluid and crosses the placenta into the mother's bloodstream. Altered AFP levels, those that are either too high or low compared to normal amounts, can indicate whether a woman is carrying a baby with a chromosome problem or certain birth defects. A pregnant woman's AFP levels decrease soon after birth.
How is the screening performed?
AFP screening is performed between 15 and 20 weeks of pregnancy. A woman will undergo a simple blood test and the blood sample will be sent off to the laboratory for analysis. In addition to checking the AFP levels, the laboratory also measures the amount of the hormones unconjugated estriol, human chorionic gonadotropin (HCG) and inhibin-A. The amount of these hormones can be altered in a woman's blood when she is carrying a baby with a chromosome problem or certain birth defects. Results are usually available within one to two weeks or less.
What does a positive screening result mean?
This is a screening test, which means that if your test result is positive, it does not necessarily mean that your baby has a birth defect, but rather that you have an increased risk of a carrying a fetus with a genetic abnormality. The purpose of this screening test is to identify those women who are at increased risk of having a baby with a birth defect as well as those who need additional testing.
If a woman does have a positive test result, her health care provider will suggest further testing to help determine whether or not there actually is a problem with the pregnancy. Women who have an abnormal expanded AFP or who are going to be 35 or older at the time of delivery have the option to undergo chorionic villus sampling (CVS) or amniocentesis. These tests can diagnose chromosomal disorders, but not all birth defects, with a high degree of certainty.
The blood test result is combined with a woman's age to estimate her own personal risk for carrying a fetus with Down syndrome, open neural tube defects, abdominal wall defects and trisomy 18. The rate of detection for women under 35 is about 85 percent for neural tube defects, 60 percent for Down syndrome and 60 percent for trisomy 18. The detection rate is higher in women over 35 years of age.
Although generally very precise, AFP screening is not 100 percent accurate. There can be false-positive results that indicate a problem when the fetus is actually healthy or false negative results that indicate a normal result when the fetus actually does have a health problem.
In addition to UCSF Prenatal Diagnosis Center's main San Francisco office, we have two satellite clinics in Northern California.
Posted by L I on 05/18/2009 @ 09:34AM PT
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You are Sooo right! I had the Quad screen done at 20 weeks and it came back abnormal and it caused a lot of undue stress. The doctor didn't give me an option of doing it or not, just sent me for it and never really explained the implications of it. I refused amnio because I was going to love my child no matter what. The doctor said he had a high likelyhood of having Downs Syndrome or trisomy 13. He was born premature but was the strongest baby in the nursery, didn't require the NICU, didn't have Downs and appeared Very healthy, we went home in 48hrs and he weighed under 5 pounds. He now has ten different diagnoses and suspected genetic condition so the amnio would have helped in diagnosing the genetic condition but I don't believe it would change his quality of life or help in any way other than having a label. I think it will be a tragedy to lose a lot of brilliant minds because parents are afraid of having a child with Autism. My son has taught me so much about appreciating the little things in life, looking at things in such a wonderful way and not taking anything for granted.
Posted by Sonya O'Brien on 05/22/2009 @ 12:56PM PT
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"@Sonya.
"tragedy to lose a lot of brilliant minds because parents are afraid of having a child with Autism. My son has taught me so much about appreciating the little things in life, looking at things in such a wonderful way and not taking anything for granted".
I just love the way you said everything. I am so sorry that you had so much undue stress. During that time you missed out on spending time enjoying your unborn child. I am so glad your child was so healthy. That is the kind of feedback the healthcare professionals need to think about so that they can wake up!!
Posted by L I on 05/25/2009 @ 06:06PM PT
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I read here http://www.downs-syndrome.org.uk/news-and-media/press-releases/2008/487-births-increase.html
that the number of Downs births are increasing in England and Wales, the reason being that todays society offers more inclusion and a better quality of life than previously.
Perception of disability plays an important role (before my son was born my perception of severe disabilty was pretty bleak, based on very limited information)
My son has Angelman syndrome, the first thing many people ask is whether I had prenatal testing, yes I did. There are thousands of genetic syndromes, and although testing is improving (and becoming cheaper) I doubt it will ever be perfect.
Improving information available to parents (if you want to make an informed choice you need to be informed) and improving supports are just as important if not more so than improvements in genetic testing.
Out of interest from the new genetic research
"genes involved in the ubiquitin-proteasome system", I think this refers to multiplications in chromosome 15q (angelman syndrome is deletion or mutation of the same chromosome region).
Posted by emma brooks on 05/18/2009 @ 10:06AM PT
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I remember reading that article and feeling very heartened by it. Prior to Charlie's birth and diagnosis, my own perception of developmental disability was also very limited and, too, based on very limited information.
This is my ignorance---is it possible to detect Angelman syndrome via prenatal testing?
Thanks for pointing that out about the new genetic research------it is certainly improvements in supports that are on the top of my list.
Posted by Kristina Chew on 05/18/2009 @ 08:47PM PT
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It can be detected but occurence rate is around 1:20 000 so its not tested for (the deletion/mutation is to small to be detected by amnio). It would be too expensive and take too long to test for all possible genetic alterations that our known.
In rare cases it is inherited (about 3%), so if there is an inherited case in the family, pre-natal testing would be offered.
Hope the new neurologist/testing is not giving you stress, at this point I wonder why he suggested it?
Posted by emma brooks on 05/18/2009 @ 11:55PM PT
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"If you open that Pandora's Box, you never know what Trojan 'orses will jump out" Ernest Bevin quotes
Autism Change.org Advocacy:
1. Instead of focusing on hoping that they never develop genetic testing for autism get the word out about false positive test results and stress that occurs from being put in a high risk pregnancy category(increase costs, increase doctors, increase travel time to high risk centers, increase tests, increase requests for ending the pregnancy).
Many people I have talked with will never have the test again for these reasons. By having the doctor say this test was available, people need to know that satisfying your curiosity (genetic knowledge about your unborn child) by taking a screening test has stressful consequences. Know all consequences before taking the test.
2. Benefit vs risk is what medicine is about. They didn't get to enjoy their unborn because of the stress of dealing with a high risk pregnancy. It wasn't worth their curiosity knowing ahead of time of genetic problems just because the test was readily available.
3. Also participation in testing is really about each state trying to save money/resources through genetic testing- less people born (even those with false positive results who are normal).
There are normal children (false positives) who get terminated. Genetic testing is about helping you decide what you want to do about your pregnancy. If you already know you will keep the child don't take the test. The test results might play havoc(confusion, disorder) with your life.
"It is recommended by the state of California for all pregnant women and can detect if they are carrying a fetus with certain genetic abnormalities".
Abnormal Alpha Fetoprotein Test results makes the pregnancy very stressful. After abnormal test results the mother can usually only get care at high risk centers. Several people I talked to including my own family members have said that after being identified as having a genetic problem pregnancy they were asked at each doctor visit to terminate the pregnancy. All (but one) had a normal baby. They didn't get to enjoy their unborn child or pregnancy. Comments I heard were "constant stress going to each doctor visit" and "constant stress about their child being OK".
How do I prepare for the test? "Before having this test done, you need to think carefully about what you would do with the results once you have them". All said looking back they would have never consented to the test because all along they had planned to keep their child. Being identified by the test with a genetic abnormality label put them in a high risk category and a stressful situation that they could not medically leave.
Prenatal Screening for Down Syndrome
by Len Leshin, MD, FAAP
http://www.ds-health.com/prenatal.htm
Copyright 1998-2002, 2007, All rights reserved
Note: The subject of prenatal testing for Down syndrome is an emotionally charged one. I am presenting this essay as a guide to parents who are faced with the prenatal tests offered by their doctor. If your fetus has been diagnosed as having Down syndrome or is simply at high risk, please spend some time to learn more ...
(This article presents information on test results)-
HOW ARE THE RISKS CALCULATED?
Harvard Health Publications
https://www.health.harvard.edu/diagnostic-tests/enhanced-alpha-fetoprotein-test.htm
Enhanced Alpha Fetoprotein Test ("Triple Screen")
What is the test?
How do I prepare for the test?
What happens when the test is performed?
What risks are there from the test?
Must I do anything special after the test is over?
How long is it before the result of the test is known?
Excerpts from this article...
How do I prepare for the test? Before having this test done, you need to think carefully about what you would do with the results once you have them. The results of this blood test cannot show for sure whether you have either a healthy fetus or one with a problem; it can only suggest which patients might want to go ahead with further testing. Because amniocentesis (the test that is usually recommended after an abnormal triple screen) has a small risk of miscarriage, and because most people with an abnormal triple screen decide to go ahead with amniocentesis, this is an important decision. You should have this test done only if you think the information it offers would help you to make decisions about your pregnancy.
What happens when the test is performed? Your blood is drawn for this test sometime between your 15th and 20th weeks of pregnancy. The blood is tested for three protein and hormone levels: maternal serum alpha fetoprotein (MSAFP), unconjugated estriol (uE3), and human chorionic gonadotropin (hCG). Your doctor needs to weigh you on the day you have your blood drawn and ask when your last period began or what your expected due date is. The analysis of the results will take into account your weight and stage of pregnancy to determine whether the levels are normal.
What risks are there from the test? There are no risks from this test itself, but there are some risks from tests that might be recommended if the test result comes back abnormal (see "Amniocentesis," page 3). This test can be stressful for expectant parents. Several things can cause the test to come back as abnormal even when there are no real health problems. Confusing results can happen, for example, in twin pregnancies and when mistakes have been made in estimating the age of the pregnancy.
Posted by L I on 05/18/2009 @ 11:08AM PT
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There's another fallout of prenatal testing, aside from the termination rate. Once there's a prenatal test, pretty much all funding for further research dries up. After all, the situation is "fixed", even if that means by termination of the "problem". Research funds for Down syndrome from the government pales in comparison to other conditions (will have to look up the exact rates, but I do have them somewhere).
Posted by Ecki Stern on 05/18/2009 @ 12:43PM PT
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You make an excellent point!!
Posted by L I on 05/18/2009 @ 01:58PM PT
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And even if there's good genetic counseling on improving outcomes and quality-of-life for Down's (or whichever condition has been detected), the "conventional wisdom" and social and economic pressure to terminate the pregnancy cause so many parents to simply *bypass* the genetic counseling that might lead them to do otherwise.
The expectation to terminate will be *very* hard to reverse for Down's; given the fear-pity-and-dread with which the major autism organizations attempt to fundraise and spread "awareness", I expect the same trajectory for autism, should genetic markers be found.
Both the termination rate and the attitude of "why spend money on autistic people, if autistic births can be prevented?"
The underlying problem is the fear-dread-and-pity message with which the media and the major autism organizations "market" "autism awareness", and fundraise. That is what has to change.
The message needs to be about what can be done to improve the quality of autistic lives, not to prevent them. And there is already plenty that can be done to improve quality-of-life, that needs to be better funded and made more widely available. Things like AAC, employment support, housing and household management support, support in postsecondary and vocational education, and support for living in the community as consumer and citizen.
These are not unrealistic goals, even for people who are deemed "low-functioning" by the conventional wisdom. AAC is often the missing first step.
Posted by Phil Schwarz on 05/25/2009 @ 02:31PM PT
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You make some excellent points, Phil. Your comments make me think about Whose Quality of Life? The unborn aren't allowed to have quality of life. It's all about 'convenient life style' of the public.
Posted by L I on 05/25/2009 @ 06:13PM PT
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More genetics research from the European Journal of Human Genetics about the MET gene as an "autism susceptibility gene."
http://www.nature.com/ejhg/journal/v17/n6/abs/ejhg2008215a.html
From the abstract:
"Taking into account the location of theMET gene under this linkage peak, and the fact that it has recently been reported to be associated with autism, the gene was further analyzed as a promising autism candidate. The gene encodes a transmembrane receptor tyrosine kinase of the hepatocyte growth factor/scatter factor (HGF/SF).MET is best known as an oncogene, but its signalling also participates in immune function, peripheral organ development and repair, and the development of the cerebral cortex and cerebellum (all of which have been observed earlier as being disregulated in individuals with autism)."
Posted by Kristina Chew on 05/21/2009 @ 07:44PM PT
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MET gene transmembrane receptor signalling is involved in several important functions of the body.
Posted by L I on 05/22/2009 @ 08:03AM PT
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Again worthwhile to post a link to the excellent position statement on genetic research in autism put together by Judy Badner, MD, PhD, of the University of Chicago's Department of Psychiatry:
http://psy-pc120.bsd.uchicago.edu/~jbadner/autgen.htm
Posted by Phil Schwarz on 05/25/2009 @ 04:50PM PT
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@Phil. "When success is measured by the reduction in the number of people with Down Syndrome that are born, then it is clear that it is not the interests of the disabled individuals that are being considered. This should not be occurring for Down Syndrome and it should not occur for autism." From the link you site,
I am so glad that you speak up for those with Down Syndrome and Autism. I really liked the petition. The paper makes very clear the issues involved.
Posted by L I on 05/25/2009 @ 06:09PM PT
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Kristina, this is the paper I may have mentioned:http://gupea.ub.gu.se/dspace/bitstream/2077/18354/1/gupea_2077_18354_1.pdf
Haven't had a chance to read it yet (it's long--someone's doctoral thesis--and I want to do it all in one go rather than in parts), but it looks quite interesting.
Posted by Ali ... on 05/25/2009 @ 04:59PM PT
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