Just as the supposed connection between thiomersal and autism has been replaced by Green Our Vaccines sloganizing about all the toxins in vaccines, so the specific reference to autism has been diluted with reference to other neurologiciacal and psychological disorders. I often read that one in six US children has some sort of mental health or neurological problem and it is often blamed on toxins in vaccines and in the wider environment. The largest single group are those who are supposed to have ADHD, with 2.4 million children in the USA on medication it accounts for 5 per cent. Depression accounts for another 5 per cent; Obsessive Compulsive Disorder between 1 and 3 per cent; Autistic Spectrum 1 per cent. A more recent addition is Bipolar disorder which moved up the scale from 20,000 diagnoses in 1994 to 800,000 or 1 per cent of US Americans under 20 by 2003.
I am sure that there is a lot of double counting here. Nearly half of all children with bipolar have another diagnosis, usually ADHD. Lots of kids with autism have depression or OCD. Children with Tourettes often have ADHD or OCD. Nevertheless there are a lot of children being diagnosed wth various neurological and psychiatric disorders and for many the treatment of choice is some form of medication.
But for Mark Geier, David Kirby and Brad Handley the broader picture is clear. Never mind the 1 in 150 with autism. They are just the tip of an iceberg. We are looking at 50 million potentially brain damaged US Americans. Something has to be done.
I think that we in the neurodiversity movement have been rightly skeptical of these figures. We understand how the prevalence for autism has been driven up by broadening the criteria, developing better screening and diagnostic tools, increasing awareness and even improving provision. “Build it and they will come come.”
Although there are problems with the abuse of medications with autistic people the big problem for many in the medical profession and for parents has been that there is no autism pill. The search for a pharmacological solution has seduced some autism researchers and led to some famous dead-ends. Frustrated parents have turned instead to alternative practitioners offering the biomedical solutions that I have criticized from the inception of this blog.
Broadly speaking autism numbers have grown in line with our understanding of autism. We have moved from a narrowly defined disorder to a spectrum. We have struggled within that spectrum to strike a balance between the concept of discrete categories of disorder and the dimensional approach which suggests that some of the differences exhibited by autistic people may be welcome additions to the diversity of human wiring. Nevertheless, developments within autism research and the debates they generate tend to take us forward.
But I detect a different process at work with those other categories and dimensions of disorder and well-being. There may not be an autism pill but there is a pill for ADHD, for OCD, for depression etc. Sometimes there are competing pills and off label pills seeking a new niche and a sales opportunity. What if the same pharmaceutical interests that the biomedical autism community revile for there role in obfuscating the question of an autism epidemic in the face of an obvious crisis for the mental health of our children [1 in 6 ferchrissakes!] actually generated that broader crisis in order to boost drug sales?
Now, let me say that I fully support the idea of children as autonomous learners, active agents in their own development. We now recognize the inner life of the child and recognize that when things go wrong and children experience crises in their emotional and psychological development they are entitled to help and understanding. But 1 in 10 ten year old US American boys on medication for ADHD? Something is clearly wrong.
A recent report in the New York Times exposes a real conflict of interest and shows how easily scientists, convinced of their own correctness can seriously compromise, not only their own credibility, but that of colleagues working ethically in the same field.
It may just be a coincidence, but those leading the drive to diagnose and treat bipolar disorder in children are also the recipients of large and undisclosed stipends from the pharmaceutical companies that prescribe the drugs used to treat those children. The key word here is undisclosed.
Doctor Joseph Biederman,
A world-renowned Harvard child psychiatrist whose work has helped fuel an explosion in the use of powerful antipsychotic medicines in children earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007 but for years did not report much of this income to university officials, according to information given Congressional investigators.
By failing to report income, the psychiatrist, Dr. Joseph Biederman, and a colleague in the psychiatry department at Harvard Medical School, Dr. Timothy E. Wilens, may have violated federal and university research rules designed to police potential conflicts of interest, according to Senator Charles E. Grassley, Republican of Iowa. Some of their research is financed by government grants.
Like Dr. Biederman, Dr. Wilens belatedly reported earning at least $1.6 million from 2000 to 2007, and another Harvard colleague, Dr. Thomas Spencer, reported earning at least $1 million after being pressed by Mr. Grassley’s investigators. But even these amended disclosures may understate the researchers’ outside income because some entries contradict payment information from drug makers, Mr. Grassley found.
It is important to remember that the failure to disclose these payments does not automatically negate the work these men have done in the field of bipolar disorder in childhood. But if their financial relationship to the pharmaceutical companies had been known in advance I am sure that their work would have been subject to much more rigorous scrutiny. I hope that it is subject to such scrutiny now and not summarily dismissed.
We in the autism community have seen what arrogance can do when a talented individual like Wakefield becomes so convinced of the correctness of his own position that he disregards the normal conventions of science in the hope that history will vindicate him. But personal conviction can lead to self delusion without the necessary corrective of an honest accounting to your peers. And when we are talking about six figure sums from “Big Pharma” honest accounting takes on a whole new meaning.
June 8th, 2008
Posted by
Mike |
ethics, mental health, psychiatry, science |
4 comments
Conflict of Interest [COI] in scientific and medical research about autism is often misunderstood amongst members of the autism community and beyond. For a start there are many potential conflicts of interest. Most people think of financial COIs. If I am paid by a drug company will my research be biased in their favour? If I have patented a vaccine am I going to defend the entire vaccination programme? If I am being paid as an expert witness am I going to tailor my evidence to satisfy my paymasters?
But what if I am also a parent? Am I motivated by hope of financial security for my child to select research that supports my case in court? Do I have a deeper, psychological need to absolve myself of any guilt for my child’s condition? Bettleheim still casts a long shadow. Am I too emotionally involved to be objective? And then there are autistic individuals engaged in autism research like Michelle Dawson and Larry Arnold. Where does their COI lie? Do we sometimes use conflict of interest to mean that you conflict with my interest?
And, as Larry argued both in his blog and in the comments on my earlier post on COIs, there are conflicts that arise because we all are individuals with a personal and cultual history and that history helps to shape the assumptions we bring to any subject.
The New McCarthyism?
Here is an extract from Richard Horton’s book, MMR Science and Fiction in which he cites Ken Rothman:
Rothman not only questioned the importance of conflicts of interest, but also challenged the policy that many scientists and editors were then and now espousing - namely, disclosure as a measure to ameliorate the conflicts that will inevitably exist in all research.
Rothman claimed that the label of ‘conflict of interest’ was little more than a thinly disguised accusation of dishonesty. The idea that there was anyone in science - or in any walk of life, for that matter - who could obtain a position of pefect objectivity was obviously wrong. Everybody, in one way or another, approaches a subject with a prior point of view. By focusing solely on financial conflicts of interest, the self appointed guardians of science, (he means people like myself, the editors of journals) were undermining a long held principle that work should be judged only on its merits. ‘By emphasizing credentials,’ Rothman wrote, ‘these policies [of disclosure] foster an ad hominem aproach to evaluating science.’ [p70]
For some people, if you declare a COI you are automatically tainted and everything you have to say is deemed worthless. But that is silly. Anyone who declares a COI is not saying “I am not to be trusted.” Just the opposite in fact. You are being completely honest. Hiding a COI is more likely to make people question your honesty.
There was a study last year into the relationship between RhIg exposure in pregnant women and autism. According to a report in Medpage Today
The study was supported by a grant from Johnson and Johnson Company and ongoing autism research support from the Leda J. Sears Trust. Neither funding source was involved in the design and conduct of the study, collection, management, analysis or interpretation of the data, preparation, review, or approval of the manuscript. Author conflicts of interest were not listed.
Johnson and Johnson are heavily involved in the manufacture of products that use RhIg. A cynic might argue that even though J & J had no direct influence on this study, the authors could have been tempted by the hope of future funding to come up with a result that pleased their patron. I would argue the exact opposite. If everybody knows that J & J are funding your study and your results exonerate J & J’s product, you are going to make sure that everything stands up to scrutiny. It is only when you fail to list the connection that people get suspicious.
That is the whole point. So-called COIs are inevitable in modern science. There would be very little research done without financial backing from industry. And what is the point of paying for lies? People talk about “big pharma” as if it were a single entity. This entity is made up of competing corporations. Even if J & J could buy a piece of research that exonerated their product, how long would it be before a rival corporation found a scientist to expose the flaws?
This brings us back to Rothman’s argument that all science should be judged on its merits and not on the supposed merits of its authors. Most of us are not equipped to judge. Even within science the degree of specialization is so great that there may be very few scientists who can judge a piece of research on its merits. Professor Simon Baron-Cohen cites the case of Richard Borcherds in his book, The Essential Difference. Borcherds was awarded the Fields Medal
for his work on a topic so obscure that most mathematicians working in his former Cambridge University department are unable to understand what he is doing. His mathematical brilliance is unquestioned by fellow mathematicians even if they cannot follow the specifics of his ideas. [p155]
Hence the importance of peer review, another much misunderstood concept. Publication after peer review does not automatically confirm the truth or falsehood of a piece of research or a theory. It tells us that a piece of work conforms to acceptable standards of scientific research and is taken seriously by fellow scientists who may go on to confirm or refute its findings in further studies.
When Rothman wrote Conflict of Interest, the New McCarthyism in Science? he had no way of knowing that 15 years later the aptly named Jenny McCarthy would be shouting down a respected pediatrician on national television while her supporters attempted to trash his reputation in the blogosphere. This is becoming a hallmark of the autism/vaccine camp’s response when legitimate science challenges their beliefs. They automatically seek to discredit the researcher rather than engage with him or her in a discussion of the research.
Over on LB/RB Joseph has written about a recent manifestation of this worrying trend. Dr Paul Offit has become a hate figure because he speaks up in favour of vaccination and is a patent holder for the Rotateq vaccine that he helped to develop. Anti-vaccine groups assume that everything he says about vaccine safety is a lie because he is defending his own financial interest.
Again this is astounding in its silliness. Even if doctors were only in it for the money you make money from developing a safe vaccine. You lose money if your vaccine is unsafe. Even a hint of danger will get a vaccine pulled. Rotashield was a vaccine against the Rotavirus. It was very effective but may have led to an increase in the risk of intussusception. The risk was of the order of 1 or 2 cases per 10000. This was quickly picked up and the vaccine was withdrawn. Rotateq was developed by Dr Offit to replace it. It does not carry an increased risk of intussusception and both he and the Children’s Hospital of Philadelphia, where he is head of infectious diseases have benefitted from the royalties on this drug. Where is the harm in that? Anyone who reads Offit’s biography of Mauurice Hilleman, Vaccinated cannot fail to appreciate that both men’s commitment to vaccination is enirely honourable and motivated by a desire to alleviate human suffering.
Expert Witnesses
Dr. Fombonne’s actions have not historically been in the best interest of families with autism—he has declared himself an expert witness on behalf of various pharmaceutical companies in thimerosal-related litigation.
So says Safe Minds. There are two sides - parents and drug companies. Fombonne has made his choice and like Offit should be disqualified from further comment because of his “conflict of interest.” This is either an outstanding example of stupidity or it is rank duplicity. I suspect the latter. There is a world of difference between the experts who have a track record in their chosen discipline and are well qualified to offer expert testimony and those who make a career out of offering their services as expert witnesses without necessarily having the necessary level of expertise to be taken seriously. Mark Geier and Boyd Haley are a case in point. Fombonne and other experts like him are employed as expert witnesses because they already have a sound background in the relevant disciplines. They are not playing catch-up on the science in order to beef up their prospects of employment as expert witnesses.
From McCarthy to McScience
One of the chapters in Horton’s book is entitled The Dawn of McScience. He argues that COIs can have a negative impact. When big money tries to dictate the scientific agenda the result is often junk science. Horton cites the dispute between researcher Nancy Olivieri and drug company Apotex over the efficacy of deferiprone, a treatment for thalassaemia. Horton’s sympathies are clearly with the researcher. A more even handed view is presented by Julian Savulescu, Uehiro chair in practical ethics at Oxford University. Both seem to agree on the need for ethical oversight of the outcome of research, alongside the traditional ethical oversight of research proposals. The latter is designed to protect research subjects. The former would give a role to ethics committees in resolving disputes over the results of research, especially when those disputes pertain to patient welfare.
This could be made to work. It might overcome cynicism about big science and big money. It might even help to stem the tide of really junk science that is used to justify so much of the so-called complementary and alternative therapies out there.
In the meantime, if we are to call a halt to the McCarthyite use of COIs to bully and harrass scientific critics of the vaccine-autism connection, it seems only fair to me to hold its advocates to the exact same standards of honesty about potential COIs that they claim to uphold.
May 25th, 2008
Posted by
Mike |
Autism, ethics, science |
10 comments
CONSPIRACY
Remember the outrageous subpoena against Kathleen Seidel that was recently quashed? Clifford Shoemaker, the author of the subpoena was ordered to show cause,
“why he should not be sanctioned under Fed R Civ P 11 – see Fed R Civ P 45(a)(2)(B) which requires that a deposition subpoena be issued from the court in which the deposition is to occur and Fed R Civ P 45 (c)(1) commanding counsel to avoid burdensome subpoenas. A failure to appear will result in notification of Mr Shoemaker’s conduct to the Presiding Judge in the Eastern District of Virginia.”
His reply is basically that “a mere mother and housewife” could not possibly have written Neurodiversity.com on her own. She must have been prompted by malice and given material aid by the drug companies to pursue a campaign of intimidation against Clifford Shoemaker, his clients and his pet witness, Mark Geier. It is alleged that Kathleen is part of a conspiracy to protect the drug companies from the legitimate claims of parents of vaccine damaged children. As Kathleen says in her latest entry, Welcome to My Conspiracy
These documents offer a remarkable exposition of the grandiose, cartoonish conspiracy fantasies entertained by advocates of the concept of autism as toxicity and tort, and the arguments of those who seek to justify the perversion of legal processes in order to oppress their critics.
CONFLICT OF INTEREST
Imagine if a piece of research exonerating vaccines was put forward by a drug company employee whose husband was working for the defense team at the vaccine court. The parents who claim that their autistic children are vaccine damaged would quite rightly be appalled if such a potential conflict of interest was concealed. This weekend three pieces of research were presented at the International Meeting for Autism Research (IMFAR) in London. All were co-authored by Dr Hewitson, all seek to demonstrate a link between vaccines and autism and the science has already been severely critiqued by Orac.
But there is more. Over on LeftBrain/RightBrain Kev has revealed that Dr Hewitson has her own potential conflicts of interest.
- She and her husband have an autistic child and are pursuing a claim for vaccine injury.
- Her husband is employed by one of her co-authors, Andrew Wakefield at Thoughtful House.
- She is affiliated to Defeat Autism Now.
This does not necessarily invalidate her work. But one wonders why Dan Olmsted, who is singing her praises over on The Age of Autism, neglected to include these details in his piece. Did he know? Did IMFAR know when they accepted her presentations? Of course it could just be another part of Kathleen Seidel’s conspiracy against anti-vaccine campaigners.
THE BIGGER PICTURE
It is important to scrutinize the claims of DANites, anti-vaxxers and their friends in the media. But in the wider world of autism there are more serious questions to engage with that pertain to the mainstream research and medical communities who exercise so much more influence over the world of autism than those on the pseudo-scientific fringe.
Is it right to refer to autistic people and “healthy” controls in a scientific presentation? How far are we justified in questioning the assumptions and methodology behind a lot of autism research? Under what circumstances, if any, is the medical model capable of yielding useful results? Who is paying attention to the ethical dimensions surrounding informed consent from autistic research subjects?
Larry Arnold, an autistic person who is also an autism researcher and a member of the board of trustees of the National Autistic Society raises these and similar questions in his initial reflections on IMFAR. After the tiresome but necessary task, so ably done by Kev, Orac and Kathleen, of dealing with some of autism’s stinkers it is good to be able to turn to an autism thinker like Larry.
May 19th, 2008
Posted by
Mike |
Autism rights, ethics, science, vaccines |
16 comments
This comment was posted to an old blog post of mine about the Judge Rotenberg Center.
I have a 25 year old son with severe autism, he is non verbal and is self abusive, self injury, aggressive, he’s 6′1″ too. I’d rather DIE than ever put my son into the JRC!! you need behavior modifaction! no punishments! now my son is doing much better I forgot to tell you those really bad behaviors had happened more when he was 15 yrs old, altho they still come up. I love my son with all my heart and I hate the fact he’s in a group home now. I live in R.I. I wish I could take him home forever. Thanks for reading.
If you read this press report you will understand the strength of her feeling. A prank phone call fooled the staff into administering a series of electric shocks to two unfortunate inmates for alleged misdemeanours committed earlier in the evening. This week the Boston Globe published a follow-up story.
By Patricia Wen
Globe Staff
May 15, 2008
State Police seized documents late last week from the offices of the Judge Rotenberg Educational Center in Canton that are related to a prank phone call last summer that led two students to wrongfully receive dozens of punishing electrical shocks, according to two people with direct knowledge of the investigation
My immediate response is “Wrongfully?” So under what circumstances should students “rightfully” receive electric shocks? My second thought is that, even if one were to accept the premise that contingent electric shock is an effective and acceptable method of behaviour modification, what sort of staff would sanction this to take place hours after the alleged infractions, and on the basis of a phone call? The original report in the Boston Globe tells us.
Six staff members worked the overnight shift at the group home at 66 Kevin Clancy Way, a tan house located in a quiet cul-de-sac in Stoughton. Five of the six had already worked a double or triple shift, while the sixth worker showed up at 10 p.m. None had much experience caring for emotionally disturbed boys at the group home. Most had been on the job less than three months.
Inexperienced, overworked staff, that’s who. But why should they comply with such a bizarre request? Again the original Boston Globe report is invaluable.
The staff was “apprehensive” and confused about the caller and discussed what to do, but they went ahead with the punishments because they were told by the caller that they would be “evaluated” if they did not obey, the report said. The caller, who made a series of calls between 2 and 4:45 a.m., had detailed knowledge of the inside of the house and led the staff to believe that he was watching them on surveillance screens at the central office.
Inexperienced, overworked staff who were only following orders and were fearful of the consequences if they did not obey. Hmm. This is abusive and bullying on so many levels. The latest report updates us on a grand jury investigation
led by the office of Attorney General Martha Coakley, said Kenneth Mollins, a New York lawyer who has filed several lawsuits against the school and who said he spoke to a representative of Coakley’s office about the Rotenberg investigation. Mollins said he was told the grand jury is also examining possible financial improprieties by the school.
Ah yes, follow the money. JRC has around 250 inmates at $250,000 a year. They are plainly not spending it on quality staff. So where does the money go?
Ernest Corrigan, a spokesman for the school, did not confirm that a seizure of documents had occurred last week. He said only that school officials have been cooperative with state and local police ever since they reported the prank phone call to police last summer.
“We’ve been supportive of the investigation,” he said.
As a mark of their “cooperation” they destroyed the surveillance tapes of last years abuse even after being told by investigating officials to preserve them. For too long the JRC has got away with the abuse of autistic and other vulnerable young people. It remains to be seen if they will get away with abuse of the legal process.
May 17th, 2008
Posted by
Mike |
Autism, Judge Rotenberg Center, ethics |
2 comments
A recent report in the Guardian provoked some furious responses in their Comment is Free section. The story itself was a fairly innocuous account of another study by Simon Baron-Cohen in support of his theory that exposure to elevated levels of testosterone in the womb carries a predisposition to autism. The furore came in response to the final paragraphs.
If it does turn out ultimately that testosterone is a causal factor in autism it may not be possible or even ethical to do anything to change it though. Previous studies suggest that the level is mostly down to the child’s genes. Researchers don’t know which environmental factors are important.
“There is a very live debate about whether autism should simply be recognised as an atypical pattern of development like left handedness which doesn’t necessarily need treatment,” said Prof Baron-Cohen, “It just needs to be recognised as different and maybe supported educationally but not cured or eradicated.”
This is my summary of the criticism generated by Simon Baron-Cohen’s statement.
The very idea! How dare anyone suggest that it is OK to be autistic? It may be OK for high functioning Asperger types and their parents. But what about those of us who struggle daily with severely autistic children who cannot speak, who tantrum and self injure, who cannot manage their basic physical needs without support and are going to end up in life-long residential care?
And it seems a very reasonable criticism to make. If your child is miserable or angry and has little chance of living an independant life why shouldn’t you want to cure him? I know parents who are actively seeking a cure for their child, who also argue for more acceptance and understanding from society for autistic people. Some of these parents are very supportive of autistic adults who have made it plain that they do not want to be cured. When I questioned this, one told me that she respected ANON’s right to be accepted for who he was but her child could not make that choice. He was low functioning and non-verbal. She would love him to progress to ANON’s level and be able to choose for himself. Until then she was going to carry on looking for a cure.
Reading through the comments on the Guardian website one or two things struck me. Parents who were angry with Professor Baron-Cohen were at pains to emphasise the negative aspects of their children’s autism. mickeydolenz wrote
Would I like my 2 autistic boys to live independently of me in the future? Absolutely. Would I want them to have families of their own? Absolutely. Would I want them to not be continuously frustrated and angry at the world around them? Of course. I really can’t see the argument against curing.
Then purelymedicinal, responded, declaring herself as Mrs Mickey D, and saying that she did not believe in a cure for autism because it was genetic. Then, when mogrammy intervened to argue that autism was a biomedical illness and the answers were all in Bryan Jepson’s new book mickeydolenz retorted,
mogrammy - no, sorry - that’s twaddle. It is a neurological condition - and that’s not theory, it’s fact. It’s utterly repugnant that snake-oil merchants like the one you cite make their living from the vulnerable.
Someone else chimed in to defend the Gluten Free/Casein Free diet and recommend Luke Jackson’s book on the subject. Luke is autistic. He is a clear example that Asperger’s Syndrome is not a mild form of autism. it can be just as severe in its own right as any ASD. The diet does not help with his autism. It helps with his food intolerances. mickeydolenz replied to this as well.
I utterly love my autistic children to pieces and I am at turns fascinated and depressed by their behaviour, as well as piss myself laughing with them. But I am ever curious as to how their brain works and how to unlock their world.
I am glad that mickey can laugh with his kids and that they are not “continuously frustrated and angry at the world around them,” as he argued at the start of the discussion. This is not a cheap shot at mickey. At the start of the discussion he was angry at the idea that autism could be a positive thing. By the end he was arguing against the idea that his children’s lives would be forever joyless unless he bought the snake oil.
After someone posted an alert on one of the egroups on Yahoo the discussion was swamped for a while by mercury fanatics. But mickey, his wife and others kept the discussion going. They were asking questions and interested in each others answers rather than hammering home a point of view. I learned a lot from reading this discussion.
It confirmed that there are not just two camps - the curebie fanatics and the neurodiverse - slugging it out with each other in the blogosphere. The question is more complex than that.
I would like to think that those of us who advocate for autism acceptance are equally open to argument and discussion. We are not fanatics or timeservers. We are people who live and laugh and love and want, not better children, but a better world for our children. (with apologies to Paul Foot)
September 15th, 2007
Posted by
Mike |
Autism, autism acceptance, autism advocacy, autism parents, ethics |
13 comments
If you have not read them already I urge you to visit Kristina Chew’s and Interverbal’s blogs where they write on an extraordinary technique employed by French psychiatrists to “treat” autism.
And if anybody is fluent in French I would be interested to know what they are saying about it on Forum Autisme My own limited grasp of the language suggests that, thankfully, a lot of French people are outraged by this “treatment” as well.
“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.
The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”
This is not quackery from some fringe movement like DAN! This is quackery from the heart of the French psychiatric establishment where Freudian-based psychoanalysis still holds sway. Before we get too smug it is as well to remember that the Tavistock Centre in the UK is funded by the NHS to treat autism with psychoanalysis. And according to the Lancet
Delion recently gave a course on the technique at the Tavistock Clinic in London, which is part of the UK’s National Health Service. Maria Rhode, a psychotherapist at the clinic, points out that there are currently no effective treatments for autism, and that caring for such children presents a major, long-term challenge to health services.
Thank you to Michelle Dawson for this. Writing on her discussion list, The Misbehaviour of Behaviourists she also informs me that Professor Hobson is a member of the Tavistock Centre. As I understand it Hobson believes autism results from a failure of interaction between child and caregiver that he regards as “the cradle of thought,” the essential foundation of what it means to be human. Here we are again. Autism is seen as a deficit that makes you less than human. So abuse of these children is OK in the name of science. I am sure scientists who experiment on animals have to follow stricter codes of ethical practise than those that apply to autistics and other victims of psychiatric research.
August 30th, 2007
Posted by
Mike |
Autism, Autism rights, Quackery in Autism, ethics, psychiatry |
10 comments
The latest edition of Communication, the members magazine of the National Autistic Society contains two interesting articles on genetic research.
GENE GENIE by Professor Anthony Bailey
The first article, by Professor Anthony Bailey of Oxford University’s Autism Research Unit, seeks to summarize recent developments in genetic research. Considering the complexity of the subject and the nature of his audience (mainly parent members of the NAS like myself with no specialist scientific training) he does a remarkable job in under a 1000 words. I find that those experts who can write coherent and concise accounts of their work for a lay audience are usually the ones with the soundest grasp of their subject matter. Professor Bailey is no exception.
He starts by emphasizing how little we know. This cannot be stressed too much. There have been a spate of recent reports in which journalists, and some scientists who ought to know better, have hyped up the latest genetic “breakthroughs” as harbingers of an imminent cure. But all we have so far are “candidate” genes. This is not to diminish the work of the scientists involved. Genetic research has been marked by a massive collaboration of scientific and funding institutions. It is detailed and difficult work that is only now beginning to accelerate with access to improved technology.
The most likely candidates are genes on the long arm of chromosome 7 and on chromosome 2. Again, caution is necessary. These are not genes for autism. They are potential genes for autism susceptibility. There is no single gene for autism. According to Professor Bailey, “the risk of developing autism seems to be conferred by the interaction between at least 3 or 4 genes (and possibly many more) and there were no clues as to what these genes might code for.”
When a gene is finally identified scientists will still want to learn more about what it does, when it is expressed and which other genes it interacts with. They will also try and identify the environmental factors at work. These factors need not be “known neurotoxins.” They may be neutral or even beneficial in the absence of particular genetic combinations.
[OK I realize that some of my readers may regard autism as a beneficial outcome. I look forward to your comments so that we can explore the nuances of meaning around accepting autism and welcoming autism.]
Our knowledge of genetic factors in autism leans heavily on work with families where more than one sibling is affected. The evidence from twin studies is that autism is a highly heritable condition. So it makes sense to look at families where this is most obviously the case when seeking the genetic causes of autism. But many parents who read Professor Bailey’s article will have no obvious genetic traits of autism in their families. A new study may help to explain this. Dr Michael Wigler is a molecular geneticist at Cold Spring Harbor Laboraory in New York and he has just published a pilot study suggesting that spontaneous mutations in the parents’ sperm or egg cells may be the cause of autism in a majority of cases. Prometheus discusses this in more detail on his blog, Photon in the Darkness, and provides a link to Dr Wigler’s paper.
This all goes to show how complex the science is. It is increasingly unlikely that we will find a simple genetic cause or even a simple genetic predisposition that relies on an obvious and preventable environmental trigger for autism. I am fascinated by the science of autism but it is not going to provide any immediate answers or easy fixes. Social policy will have a greater impact on the quality of life for autistic people in the foreseeable future. This is why public attitudes to autism are so important - a point addressed in the second article.
CHOOSING THE FUTURE by Dr. Phiippa Russell
Dr Russell is a Disability Rights Commissioner and Disability Policy Advisor to the National Childen’s Bureau. She wrote about the ethical implications for genetic testing and research. She began by pointing out that alongside the potential health benefits of genetic science there is also the danger that “the primary focus of new genetic technology might not be on improving the quality of life and healthcare for vulnerable individuals. Instead, it could be lead to eugenic attitudes, which devalue disabled people and encourage discrimination in employment and other areas of life.”
There are some areas where genetic screening ought to be non-controversial. But what if it leads to discrimination in obtaining employment or essential life insurance? Dr Russell has an interesting take on this. She argues that women with a known genetic susceptibility to breast cancer may acually live longer than other women who are less likely to have regular mammograms and more likely to have their cancer detected later, when treatment options are less effective.
This kind of logic may appeal to actuaries. But most people will react negatively to the idea of disability, especially if it is a genetic disability that is predictable and, disregarding David Hume, therefore ought to be prevented. Dr Russell thinks that “If we accept this view, then we risk
- reducing embryos, foetuses and, in consequence, individuals to their genetic characteristics, thereby reversing the progress made concerning human and civil rights for disabled people
- increasing responsibility (and social exclusion) for familes with disabled children, where the disability was related to genetic predisposition
- ignoring the multiple talents of disabled people and the real contribution which they make to family and society.”
Genetic science will advance, regardless of the ethical dilemmas it creates. People with disabilities ought to benefit from these advances. But according to Dr Russell “there are challenges in avoiding unnecessarily negative pictures of quality of life and value to the local community. “
She does not mention autism by name but goes on to say, “Many readers will be both aware and proud of their disability. It is unique to them and carries benefits as well as some challenges.”
Dr Russell ends with his quote from an unidentified disabled man.
“Disabled people themselves must join the debate about the ethics of genetic testing - you cannot close Pandora’s box once it has been opened, but the challenge is in using new information proactively to improve quality of life, not to shut down someone’s work and other opportunities because of poor understanding and low expectations. Knowledge is power - but it is essential that it is controlled by the person directly affected and used for his or her benefit, rather than used by others as a means of social exclusion.”
This is one reason why next month’s meeting on the Politics of Autism is so important. Anyone who can attend should ring up and book a place now.
According to Communication “The NAS is keen to hear the views of members and others on this complex issue … email communication@nas.org.uk with the words ‘gene ethics’ in the subject line.” The full articles in Communication are only available to NAS members. If you want to join email membership@nas.org.uk
I am greatly encouraged by the NAS inviting this sort of debate. I do urge people to respond.
August 27th, 2007
Posted by
Mike |
Autism, Autism rights, National Autistic Society, disability rights, ethics, genetic research, science |
9 comments
