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GI and autism studies ‘none of these trials appeared to be of high quality’

8 Feb

A new paper is due out soon looking at the available literature on GI and autism.

The significance of the association between many gastrointestinal (GI) pathologies and autism has yet to be discovered. The aim of the present study was to review available evidence documenting any link between autism and GI histopathology in children

I’ve only got the abstract to go by but even that is fairly damning.

Eight studies have reported the histopathological features of the GI tract in children with autism and fulfilled inclusion criteria. In general, none of these trials appeared to be of high quality. Apart from intestinal lymphonodular hyperplasia, the majority of these findings were not consistent….GI pathological findings in children with autism have been inconsistent. The present available evidence does not support or refute a link between GI histopathology and autism in children. The significance of intestinal lymphonodular hyperplasia in these children is unknown.

I’m hoping to get the full paper soon. It would be interesting to know what these eight studies were.

Update

Here’s the eight papers of low quality:

Furlano RI, Anthony A, Day R, et al. Colonic CD8 and gamma delta Tcell
infiltration with epithelial damage in children with autism. J Pediatr
2001;138:366–72.

Wakefield AJ, Anthony A, Murch SH, et al. Enterocolitis in children
with developmental disorders. Am J Gastroenterol 2000;95:2285–95.

Torrente F, Ashwood P, Day R, et al. Small intestinal enteropathy with
epithelial IgG and complement deposition in children with regressive
autism. Mol Psychiatry 2002;7:375–82. 34.

Ashwood P, Anthony A, Pellicer AA, et al. Intestinal lymphocyte
populations in children with regressive autism: evidence for extensive
mucosal immunopathology. J Clin Immunol 2003;23:504–17.

Ashwood P, Anthony A, Torrente F, et al. Spontaneous mucosal
lymphocyte cytokine profiles in children with autism and gastrointestinal
symptoms: mucosal immune activation and reduced counter regulatory
interleukin-10. J Clin Immunol 2004;24:664–73.

Wakefield AJ, Ashwood P, Limb K, et al. The significance of ileocolonic
lymphoid nodular hyperplasia in children with autistic spectrum
disorder. Eur J Gastroenterol Hepatol 2005;17:827–36.

Torrente F, Anthony A, Heuschkel RB, et al. Focal-enhanced gastritis in
regressive autism with features distinct from Crohn’s and Helicobacter
pylori gastritis. Am J Gastroenterol 2004;99:598–605.

14. DeFelice ML, Ruchelli ED, Markowitz JE, et al. Intestinal cytokines in
children with pervasive developmental disorders. Am J Gastroenterol
2003;98:1777–82.

No surprises there.

Recent autism prevalence studies point to variability in methodology and bias

8 Feb

In Prevalence of autism spectrum disorders and influence of country of measurement and ethnicity , the authors look at ASD prevalence by country and ethnicity. They hypothesize that “methodological factors, socioeconomic variables, and bias” play a role in the variability in autism prevalence.

The disparities by geography and by ethnicity within the data reported within the U.S. has been a big concern of mine for some time. Clearly there is not an obvious difference between, say, New Jersey (with an estimated prevalence of 10.6/1,000) and Alabama (with an estimated prevalence of 6/1,000) to account for the large difference in estimated prevalence.

Background
The prevalence of autism spectrum disorders (ASD) is generally somewhat lower in countries outside of North America and Europe. While there are culture-specific patterns of social cognitive processing, the influence of such patterns upon ASD prevalence has yet to be fully explored.
Methods
A comprehensive literature search for original articles reporting ASD prevalence was undertaken. Data across studies were compared with a particular focus on variables of geographic residence and ethnicity.
Results
ASD prevalence varies across countries in a manner that appears to suggest that the greatest influence is due to methodological variables. The nature of a potential influence of culture-specific patterns of cognitive processing upon prevalence remains unknown. The available little data concerning the association between ethnicity and prevalence are limited to studies within the United States (US) showing differences in children of Hispanic descent relative to Whites, a finding for which a definitive explanation is lacking.
Conclusions
Available evidence suggests that methodological factors are largely responsible for differences in ASD prevalence across studies. The much discussed increase in prevalence in ASD has been observed worldwide, suggesting that the refinement of diagnostic methodology and/or broadening diagnostic concept is not limited to Western countries. Within individual countries, only in the US has the influence of ethnicity upon ASD prevalence been examined in depth. In the US, children of Hispanic descent have the lowest prevalence of ASD, while Whites tend to have the highest prevalence of ASD. Hypothesized etiological factors for such prevalence differences include methodological factors, socioeconomic variables, and bias.

In Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000-2006. African American (non Hispanic Black) students are less likely than Non Hispanic White students to be identified with “less severe” ASD’s. This even after controlling for socioeconomic status.

Racial Disparities in Community Identification of Autism Spectrum Disorders Over Time; Metropolitan Atlanta, Georgia, 2000-2006.

Jarquin VG, Wiggins LD, Schieve LA, Van Naarden-Braun K.

From the Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.
Abstract

OBJECTIVE: Past research indicates that non-Hispanic black (NHB) children are less likely than non-Hispanic white (NHW) children to have an autism spectrum disorder (ASD) diagnosis, even if they seem to meet criteria for the disorder. This study examined differences in community identification of ASDs between NHB and NHW children identified by a population-based surveillance system.

METHODS: Participants were identified as an ASD surveillance case by the Metropolitan Atlanta Developmental Disabilities Surveillance Program in surveillance years 2000, 2002, 2004, and 2006. Health and education records were abstracted and reviewed to determine ASD surveillance case status; community identification was defined by a documented ASD diagnosis, special education eligibility, and behaviors noted in records. Children were placed in 1 of 5 mutually exclusive categories on the basis of ASD specificity.

RESULTS: Total ASD prevalence was higher for NHW than NHB children, but NHB children were more likely than NHW children to have autistic disorder and autism eligibility at a public school documented in records. NHB children were less likely than NHW children to have pervasive developmental disorder-not otherwise specified and Asperger’s disorder documented in records, even after controlling for socioeconomic status. NHB children were more likely than NHW children to have co-occurring intellectual disability.

CONCLUSION: NHB children were less likely than NHW children to have been identified with less severe ASDs, which might have prevented or delayed intervention services that would have catered to their needs. This study illustrates the need for continued professional education, particularly concerning milder ASDs in minority groups.

As a society, we have decided that autistic students often need educational supports distinct from those of children with other disabilities. Clearly if we are to serve our students appropriately, we should be accurately identifying each student’s disability (where they exist). The fact that we are not uniform in identifying autistic students indicates that we have far to go in this regard.

Arc major events this week: cuts in spending levels target disability programs

8 Feb

From this week’s “Capital Insider” email from The Arc and United Cerebral Palsy. The US Federal government is preparing the next year’s budget and cuts are on the way. The fewer people who contact their representatives, the deeper the cuts will be for their communities.

FY 2011 Appropriations – House Budget Committee announces spending levels; Targets for disability programs are more than 15% below current levels.

House Budget Committee Chairman Paul Ryan (R-WI) announced the overall budget allocations for the Appropriations Committee to use to set spending levels for the remainder of the FY 2011. Currently the federal government is operating under a Continuing Resolution (CR) which largely extended FY 2010 spending until March 4, 2011. Under the plan, non-security programs would be reduced by an average of 15.4% below the current funding levels. Using this amount, the House Appropriations Committee Chairman Harold Rogers (R-KY) announced the specific levels for each of the 12 Appropriations Subcommittees. The Labor, Health Human Services and Education Appropriations Subcommittee will need to produce a bill that is 12.7% below funding for the remainder of the year. The Transportation, Housing and Urban Development Subcommittee will have to cut funding by 26.1% to meet the target. This does not mean that the subcommittees will need to cut all programs by this amount, but that the total funding for all programs within their jurisdiction cannot be above this level. The Subcommittees will decide how much funding to cut from each program in the coming weeks.

Budget – New bill introduced to radically cut federal spending across all programs, including entitlements

Senators Bob Corker (R-TN) and Claire McCaskill (D-MO) introduced S. 245, The Commitment to American Prosperity (CAP) Act, which would cap all federal spending at a set level. This would include all entitlement spending (Social Security, Medicare, Medicaid and others) and all discretionary spending (education, housing, employment and others). The cap would be tied to a percentage of the Gross Domestic Product (GDP). GDP is the total market value of all goods and services produced by our economy. If the spending cap is exceeded, the Office of Management and Budget (OMB) would be authorized to make automatic spending cuts across all federal programs. A two-thirds vote in Congress would be needed to overturn any cuts. The amount of the cuts would be in proportion to how fast each program is growing. Unlike previous laws to control spending (Gramm Rudman Hollings, Pay As You Go) there are no protections for low income entitlement programs such as Supplemental Security Income and Medicaid. As a result, the impact of exceeding the cap would mean that the biggest cuts would come from Social Security, Medicare and Medicaid. These programs make up a significant proportion of federal spending and are growing faster than many other programs due to the aging of the population and rising per-person health care costs.

Bill Gates on the anti-vaccine movement and its connection to autism

4 Feb

Gates: Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it’s an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn’t have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts — you know, they, they kill children. It’s a very sad thing, because these vaccines are important.

Bill Gates, telling it exactly like it is.

Podcasting to the future

4 Feb

There’s so much I wish I knew about my parents. Now that I am old enough to understand them as people rather than as “mom” and “dad”, it would be so nice to hear what they thought about as I grew up.

Through a strange series of events, I happen to have one of those small digital video recorders that I don’t really need. I gave it to my wife, who didn’t use it. At one point it hit on me. Podcasting. Not just any podcasting, podcasting to my family.

The camera is now at work. As I drive to work I sometimes hit on things I wish I could tell the future. Sometimes I find a quiet place, close the door, turn on the camera and talk. I say the things now that I may not remember later. Like how you can take as many pictures as you want, but it will never remind you of the feeling of a little hand in yours as you walk to school.

Sure, maybe the files will get lost, just like the negatives from the pictures my parents and grandparents took. Maybe. But, perhaps someday my family can see what I thought (and how I looked!) way back in 2011.

Did Andrew Wakefield keep patient medical records in his personal possession?

4 Feb

Brian Deer recently gave an interview on EconTalk. The transcript and recording are up on the site as “Deer on Autism, Vaccination, and Scientific Fraud.” I wrote about this recently for LeftBrainRightBrain and ever since I’ve had a nagging feeling that I missed something important. Something was wrong.

The sentence that was bugging me was this:

The next stage which was very unfortunate for him was that we got a court order against him requiring him to hand over to our lawyers the hospital medical records of the children.

Now I know why this bugs me. Mr. Wakefield should not have had access to the records. Take a look at the time line Brian Deer produced. The lawsuit was in 2005:

January 2005: Wakefield initiates libel lawsuits, funded by the Medical Protection Society, against the Sunday Times, Channel 4, and Brian Deer over Deer’s website, claiming that all allegations are false and defamatory

By this time, Andrew Wakefield had left the Royal Free Hospital. In fact, he had been gone for over 3 years:

October 2001: Wakefield is asked to leave the Royal Free after failing to mount a large scale controlled study to confirm or refute his claims about MMR

Which leaves me with the nagging question: How did Andrew Wakefield produce the patient records for Brian Deer?

Edited to add: Note, commenter sheldon101 in the discussion below puts forth the very plausible explanation that these records would have been available to Andrew Wakefield due to the GMC proceedings which had been initiated against him by this time.

One of the big talking points of late amongst the supporters of Andrew Wakefield is the charge that Brian Deer somehow illegally obtained copies of medical records for the children involved in the Wakefield research program. In a strange twist of fate, it appears that it is Mr. Wakefield who had them in his possession.

If true, we must ask whether this was appropriate for him to keep the records. Was it even legal? Andrew Wakefield was, at this time, not at the Royal Free Hospital. He was not the treating physician for the children at any time. Had he obtained permission from the Royal Free to take those records with him? Could the Royal Free have even granted such permission? Did he have written permission from the parents, all the parents, before taking the records?

It is a very interesting question. One which I hope Mr. Wakefield will address.

As an aside, Mr. Wakefield recently disclosed a “new” document which clears him of wrongdoing (“New document confirms that there was no fraud”. This new document was a handout from Prof. John Walker-Smith for a Wellcome Trust meeting, entitled “Enterocolitis and disintegrative disorder following MMR: a report of the first seven cases”.

Just a note. This “new” document was entered into the GMC record on Day 74 when Prof. Walker-Smith was on the stand. It didn’t clear them then.

Is this perhaps new to Mr. Wakefield? Did he miss that day at the GMC? Well, no. Andrew Wakefield refers to this document in his complaint to the Press Complaints Commission (although he gets the year wrong as ’06 instead of ’96), and he refers to it in his book, “Callous Disregard” (page 202. It’s citation 73 for that chapter).

I guess Mr. Wakefield’s definition of “new” and mine differ. As do our definitions of “ethical” and many other definitions.

How well do institutional review boards work at protecting patient’s rights?

3 Feb

One factor that struck me in the interview that Brian Deer gave recently was the fact that until rather recently, he would have had no method to obtain the ethics committee (in the US institutional review board or IRB) information on Andrew Wakefield’s research. The IRB was internal to the hospital. Without the Freedom of Information Act, he may never have gotten access to these records.

He [Andrew Wakefield] could never have expected when he was doing this research that all of a sudden his funding would be exposed to scrutiny, and also the Ethics Committee. In America called Institutional Review Boards. Bodies of doctors, scientists, others associated with medical centers which give permission for research to take place. The paperwork of that body of the Royal Free Hospital also moved into the public domain by the Freedom of Information Act. I think I was the first person ever to get hold of these kinds of papers.

Andrew Wakefield clearly didn’t take ethics approval seriously. He started his program before the ethics approvals were in place. When asked to explain why he took blood at a birthday party without ethics approval, his explanation was that he didn’t think that ethics approval was needed for people who were not NHS patients.

Q Did not that difficulty, which, as I say, appears to have been encountered by researchers other than yourself, indicate to you that there were ethical considerations about undertaking this procedure on normal children?
A Yes. The ethical considerations that I considered were clearly that there was full informed parental and child consent. As I have said, my understanding at that time was that ethics committees existed for the protection of NHS patients.

In another infamous example, David and Mark Geier received approval for research from an IRB. The IRB was had David and Mark Geier, Mrs. Geier and other interested parties as members. This would not have come to light without another Freedom of Information Act (US) request. If I recall correctly, the IRB was instituted after the research began as well.

I know that these are pretty egregious examples but I am left wondering–how many researchers consider ethical approval to be just an annoyance? Just some rubber stamp they need in order to do their research? I hope the number is small. I hope that in the day of FOIA requests, institutions and researchers take this seriously.

Jenny McCarthy backs away from vaccines

3 Feb

As I blogged recently, Paul Offit was a guest on a US show called The Colbert report. Whilst emailing him about his appearance he mentioned the following:

Of interest, one of the show’s staff said that xe had been called by Jenny McCarthy (which I assumed meant Jenny McCarthy’s handlers), who told xyr not to mention Jenny’s name because *Jenny no longer speaks out against vaccines* . [Jenny’s handler was told] that Colbert wouldn’t mention her name but I was welcome to. The opening came when Colbert said he hadn’t heard about the science. But I didn’t mention McCarthy.

My, my. I wonder if anyone has told the founder members of Generation Rescue this little factoid? And what use to them is a Jenny McCarthy that won;t spout off about vaccines at the drop of an opinion?

Russ Roberts hosts: Deer on Autism, Vaccination, and Scientific Fraud

2 Feb

I keep thinking I’ve blogged the last on this. But, I do think there is some interesting information here for some. In Deer on Autism, Vaccination, and Scientific Fraud, Brian Deer goes through the history of his investigation–how/why he got started, what tipped him off that something was amiss with Mr. Wakefield’s research, the mistakes Mr. Wakefield made in trying to handle and quash the story.

This post is long, but it covers a lot of material not about the investigation. It answers many questions that have been posed (such as what sort of job does Brian Deer have, how did he get access to information about the Lancet 12 children).

Investigative journalist Brian Deer talks with EconTalk host Russ Roberts about Deer’s seven years of reporting and legal issues surrounding the 1998 article in The Lancet claiming that the MMR vaccine causes autism and bowel problems. Deer’s dogged pursuit of the truth led to the discovery that the 1998 article was fraudulent and that the lead author had hidden payments he received from lawyers to finance the original study. In this podcast, Deer describes how he uncovered the truth and the legal consequences that followed. The conversation closes with a discussion of the elusiveness of truth in science and medicine.

Russ Roberts’ bio:

Russell Roberts, Associate Editor. Russell Roberts is Professor of Economics and the J. Fish and Lillian F. Smith Distinguished Scholar at the Mercatus Center at George Mason University. Before coming to George Mason University, Roberts was at Washington University in St. Louis where he was the founding director of the Center for Experiential Learning at the John M. Olin School of Business and a Senior Fellow at the Weidenbaum Center on the Economy, Government, and Public Policy. Roberts has also taught at the University of Rochester, Stanford University, and UCLA. He holds a Ph.D. in economics from the University of Chicago.

Roberts is a regular commentator on business and economics for National Public Radio’s Morning Edition. In addition to numerous academic publications, he has written for the New York Times and the Wall Street Journal. Professor Roberts is especially interested in communicating economics to non-economists. His first novel, The Choice: A Fable of Free Trade and Protectionism, a jargon-free book on international trade written for the non-economist, was named one of the top ten books of 1994 by Business Week and one of the best books of 1994 by the Financial Times. An updated and revised edition was published in the spring of 2000. His new book is The Invisible Heart: An Economic Romance (MIT Press, 2001).

Russ Roberts is the host of EconTalk, economics podcasts available here and through iTunes. He blogs at Cafe Hayek along with Don Boudreaux.

There is an audio podcast and a rough transcript on the site.

In 1998, when the Lancet paper came out with a big splash, Brian Deer was working on stories about the DPT vaccine. But he decided against working on the MMR story at that time. He knew that to do the story correctly meant a lot of work, not just publishing what Mr. Wakefield and the Royal Free put out in a news conference:

I happened to be looking at that purely by chance when Wakefield’s paper was published. I looked at his paper and thought there was something very odd about it, doesn’t sit right just reading it on the page. Said at the time I was absolutely not going to get involved in MMR. Journalistically at the time, allegations against vaccines, if you want to do them in a responsible way rather than simply go to government experts or parents or people with interests and write down what they say and present the clash of opinions–if you want to understand what the story is really about, they require an enormous amount of work.

Later, he got pulled into the story:

At the time people were already saying: MMR, Brian Deer, he’s our expert, based on what I’d done in DTP. But in 2003, one of the editors was changing jobs, taking over some feature pages; wanted some stories. Said to me: Can’t you do investigation? I said: Well, what? Three or four different ideas. One was MMR. Didn’t want to get involved because there was a lawsuit coming up. By serendipity the lawsuit was cancelled and we’ll just do a feature, spend 2-3 weeks on the outside on MMR. Three weeks turned into 7 years, though not the whole time. Did make a couple of TV shows about other things as well.

Brian Deer started on the story, and right away he got pushback from Andrew Wakefield:

When you started looking into that Wakefield study, how did you proceed and what did you discover? Did routine journalistic work. At the start, put a phone call in to Dr. Wakefield. He always works with professional publicists; this time his publicist, within about 3 hours of me calling, his publicist had made a complaint against me to the paper. A bit of a strategic mistake on their part. The essence of the mistake is I am self-employed. But I have worked for the Sunday Times since 1981–that is my home. I was a staff reporter, a specialist, they sent me to the United States, and so on. But they imagined that this meant I was some sort of outsider. When they got onto the paper and started making complaints, they were making complaints against somebody who actually sat at the next desk to the editor, who had worked with the head of the legal department since we were all young together. So, it didn’t work, the complaint. I was a known entity. Whilst I am regarded as being a difficult, mercurial person, I think it is true to say I am trusted. That was the first mistake they made.

Brian Deer made some phone calls. Talked to parents of the Lancet 12. He immediately found that there was a problem. The “case series” was heavily biased. The children were recruited. They were involved in litigation.

Right at the start I rung up some parents who had been in the original paper and interviewed them. Interviewed them in a way they had not been interviewed before. Produced important information within hours of beginning the story. Which was? I phoned a lady who had started a campaign group against the MMR back in the 1990s and she told me in the conversation that members of her group were in the Wakefield study; said: they are all members of our group and still in the group. So these parents who had turned up at the hospital, she told me they were all members of her campaign group. Immediately alarm bells started to ring, because nothing about that had been mentioned in the paper. They all just appeared to be routine patients of a big London hospital; but she was saying they were part of a group. A group that had been created before the study. It was the result of her campaigning. She put advertisements in newspapers and made approaches to a firm of lawyers.

He discusses the start of the interviews. How he interviewed one parent using “Brian Lawrence” and how the information he heard didn’t mesh with the Lancet paper:

How did you interview them and what did you discover? The key one in the series of 12 was family 2. The mother, it came out over a period of time, had been a long-time collaborator of Dr. Wakefield’s. I went to interview her; in fact, I used my middle name which had been editorially approved from my managers rather than my full name so they wouldn’t google me and see I was an investigative reporter. I said I was Brian Lawrence, my middle name. How were you representing yourself? My friends say I’m a journalist you wouldn’t want to write about you. You would google me. I asked her all the questions people ask, isn’t it awful; who do you blame? I then went into exceptional detail as to what actually happened when she said her child was vaccinated and developed these problems. Went over her story in great detail. She’d already recently been involved in litigation; so the matter was very clear in her mind. She told me a very detailed story. You could say: People forget, matter of time; but this was the moment when she was saying her child’s life had forever been destroyed. Have to expect she would have that in her mind. It was quite clear that the story she was telling me did not correspond with any case in Wakefield’s paper. What it boiled down to in her case was that she had changed her story, told one story when she’d gone to the hospital and now telling another story; and the two stories couldn’t be reconciled. The difference was when did the problems of autism first reveal themselves. In her story that she told the hospital, it was 14 days; but in her actual story, far from the case. In fact it was months. She’d given one story which suited the paper. She may have done so in complete good faith. Might have misremembered. But when she had the opportunity to study her child’s records, it was a different story.

He tells of the first stories coming out in the Sunday Times, revealing that Mr. Wakefield was working as a paid expert, his patent, and the fact that data from his own laboratory (from Nicolas Chadwick) showed that there was no evidence of measles virus in the gut tissues of the children.

As a result of that, Wakefield made his second big mistake. His first was to have complaints made against me to my employers. Second was to begin litigation. He sued for libel.

Because of the lawsuit, Brian Deer was able to obtain more information. He was pretty much forced to in order to defend himself in the legal action. He used the freedom of information act. This exposed the connection to the Legal Aid Fund and the documents from the ethics approvals for Mr. Wakefield’s research (which showed that Mr. Wakefield started before he had ethical approval).

He couldn’t have expected–maybe this was his second mistake and suing me was his third mistake–in late 1996, early 1997, going back to when Princess Diana was still alive, that the incoming Labour government, the Tony Blair government, with a commitment to produce a Freedom of Information Act. America’s had a freedom of information act for so long no one can remember when it began. We had one introduced by the incoming Blair government. Enacted in 2000, started to take effect in 2004. Because the government had told government bodies to act as if the Act was in force, I was able to get from public bodies the fact that Wakefield had been paid. Funding Authority, in Britain called the Legal Aid Fund. Kind of like public defender system except the government doesn’t provide the defenders–it provides the money. So, it was a government fund to allow access to poorer people to litigation which had funded Wakefield’s lawyer. He could never have expected when he was doing this research that all of a sudden his funding would be exposed to scrutiny, and also the Ethics Committee. In America called Institutional Review Boards. Bodies of doctors, scientists, others associated with medical centers which give permission for research to take place. The paperwork of that body of the Royal Free Hospital also moved into the public domain by the Freedom of Information Act. I think I was the first person ever to get hold of these kinds of papers.

Mr. Wakefield tried to get the lawsuit put on hold, but Mr. Deer was able to force the case to proceed. Mr. Wakefield kept the pressure up:

There were occasions. He also sued me for my website, for which I have unlimited liability, would have lost my home had it been true. I would be sitting at my computer doing some work and there would be a ring on the doorbell and there would be a man dressed in black leather with a motorcycle helmet on and he would present me with an envelope. This happened to me twice. I opened the envelope and there’s an [?] for Wakefield’s legal costs for the hearing that was going to take place the next day in court. The figures were about $30,000 U.S. dollars, that kind of money just for one hearing. That was the kind of pressure they were trying to put on me.

And this proved to be a tactical mistake for Mr. Wakefield. This gave Brian Deer access to the medical records:

The next stage which was very unfortunate for him was that we got a court order against him requiring him to hand over to our lawyers the hospital medical records of the children. I never took possession of them. The judge balanced the issues of the confidentiality of the children as opposed to the fairness of the litigation in front of the court. Ordered that I be allowed to read the unredacted–with their names and all their details–of the 12 children. There were just 11 at the time–the American wasn’t involved in this. So under strict supervision of my lawyers, with a lawyer sitting at the end of the table throughout, I sat and read the medical records of the children.

It appears that Mr. Wakefield knew that giving Brian Deer access to this information was a problem, as he chose this time to cancel his lawsuit. Brian Deer couldn’t use the information, but at this point he knew enough details to realize that there was an even bigger story here. So he attended the GMC hearings:

I have never said anything about what I read in those medical records. The position is that they were disclosed to me in the course of litigation and I may make no use of anything I saw in those records or disclose anything. As I was sitting there reading them, Dr. Wakefield’s lawyers were in a taxi travelling across London to the High Court to disband the lawsuit against me. When I got home that night–and I hadn’t taken any notes with me or documents–I went home, phone rang, and it was my lawyers saying: It’s over. They’ve thrown in the towel. So I’m in the position where I have read the medical records of these children but can make no use of the content of them. However, I have to say–I’ve talked to my lawyers about this–it is a fact that it’s impossible to un-know something. Once you know something, you can’t stop knowing it. Unrealistic. So, what I did was to ensure that I presented myself at the next opportunity where these medical records would go on display. And they would go on display at a Disciplinary Hearing which arose from my original stories.

Asked a “what next?” question, Mr. Deer responds that it is time to move on:

Not sure I want to spend a lot more time on long investigations. Saying of the Buddha: The things we dwell on become the shape of our minds. I’m kind of tired of the hunt aspect of it and the adversarial quality to investigative journalism, the extraordinary hours that have to be put in to it to get anywhere. The complex legal issues that are always coming up. In an ideal world I’d find something that didn’t require me to do more than write a couple of hundred words in a piece and be cheap and cheerful. But I have a feeling that is just how I am feeling at the moment and it won’t be long before something else comes along that I get interested in and get drawn off into. I think what I need now is a holiday! I for one now am grateful. Striking a blog against fraud doesn’t make up for all the pain and losses people suffered as a result of the fraud, but it will open people’s eyes down the road to other things.

Mr. Deer goes into the results of the investigation, both his and the GMC investigation. He discusses how Mr. Wakefield was found guilty of multiple ethical violations, including subjecting disabled children to procedures which were for research purposes and not in their clinical interest, dishonesty, financial issues, etc.. He discusses the costs, both in Mr. Wakefield’s expert fees (about $750,000) and the costs of the GMC investigation. The costs to public health as MMR uptake dropped in the UK and measles came back.

Most people in this subject have seen it in terms of vaccines, measles, infectious disease, autism, or things like that. From the start, I’ve always seen it as being as being an issue of the integrity of science. Whether this paper was true or not and how he could get away with how he got away with. I think it is a depressing picture. It’s been in the region of $10 million dollars to crack a case series of 12 patients. The money involved with the General Counsel hearing, the litigation involved, journalistic fees, and all the staff gone around this to get to the bottom of this little case series of 12 patients. The great bulk of science is not that interesting to the general public and therefore would not create the cause for a newspaper reported to be funded by a newspaper or television station to go after this for such a long period of time and get all this investigative work done with government regulators and what have you. So, you really would have to wonder what else is going on in laboratories and medical centers. The fact that Wakefield thought he was going to get away with it, and the casual way he went about it leads me to think he was working within a culture within which that wasn’t far from unusual, wasn’t far from extraordinary–the kind of misrepresentations he made were far from remarkable by common standards, I suspect. Part of it the nature of human beings; part of it the elusive nature of truth. Part of it is the nature of the publication process.

Vaccines and Autism: A Story of Medicine, Science and Fear

2 Feb

Tomorrow on National Public Radio (US) The Diane Rehm Show will host a discussion of autism and vaccines: Vaccines and Autism: A Story of Medicine, Science and Fear

In 1998 a research paper was published that linked the childhood measles, mumps and rubella vaccine to the onset of autism, a life long developmental disorder. Follow up studies could not replicate the findings casting doubt on its conclusions, and earlier this year it was proven that this original study was, in fact, fraudulent. But the damage was done. Childhood vaccination rates dropped resulting in outbreaks of measles and whooping cough. Funds that would have gone to new research into the causes of autism were diverted, and surveys indicate that about one in five Americans continues to believe that a childhood vaccine can trigger autism. A story of fraudulent medical research and its consequences.

Guests will be:

Seth Mnookin: Author of “Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top” and “Hard News: The Scandals at the New York Times and Their Meaning for American Media.” He is a contributing editor at “Vanity Fair” and a former senior writer for “Newsweek.”

Dr. Roberta DeBiasi: pediatric infectious diseases physician at Children’s National Medical Center

Alison Tepper Singer: Founder and President of the Autism Science Foundation, formerly Executive Vice President of Autism Speaks, served on the federal Interagency Autism Coordinating Committee (IACC.)

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