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Press coverage of special education costs during a budget crisis

20 Jan

Let’s list a few obvious facts: California is in the midst of a budget crisis. Governor Brown just took office and is faced with a massive deficit. Much of the state’s budget is educational. Some of that budget is special education.

There needs to be a real discussion of how to provide an appropriate education for special needs kids in this time. Unfortunately, news stories tend to give a very mixed message–sometimes good, but often using very loaded language. The loaded language does not help anyone, least of all the students.

Here is an article in the Contra Costa times: Special-education students heading back to campuses. It discusses the trend amongst schools to pull special needs kids out of private placements and into the district’s own placements. The reason for this shift:

“In the past, it was easier to send kids away to nonpublic schools,” said a state Senate Education Committee consultant who spoke anonymously because she did not have authorization from the legislators she works with. “Now, part of the move to bring them back to public schools is money.”

Private placements can cost a lot. No one denies it. But the focus needs to start with what is appropriate for the individual student in question. That’s the law. Plus, we need to consider what is really cost-effective for the school within the constraints of an appropriate education. Of course schools can save money when disabled children are in cheaper placements. To take a completely ridiculous stance, we could save money by just denying them the right to any education. We don’t. Why? Because it isn’t the right thing to do. It impinges on the rights of the children.

The story from Contra Costa has an early paragraph that bugs me for a different reason, though. I need to get past this. At a time when there is a big movement to reduce or eliminate seclusions and restraints, private placements are painted as a way around the restrictions placed on public schools:

Private special-education schools train employees to respond to crises, and allow staff members to seclude and physically restrain students when necessary.

One Tobinworld 10th-grader whose mother did not give permission for her to be identified said that with physical restraint, “one time is all it takes.”

She credits the shock of being pinned facedown during an emotional outburst this year with helping her learn to control her temper.

For good behavior, Tobinworld students earn a steady stream of “toys, goodies and yummies,” such as the opportunity to play video games or take trips to the school’s in-house Baskin-Robbins ice-cream parlor. Several days of meeting behavioral goals mean bigger rewards, such as jewelry and electronics. Perfect attendance earns cash.

Officials take the approach that extraordinary measures, such as using junk food as a reward, are necessary to handle extraordinary problems.

Private schools shouldn’t be a means around a regulation. They should be a means to provide for the individual’s unique needs.

On the other side of the coin is this quote:

“Every little thing that we ask for in a private school, it’s an extra charge,” said Pittsburg school district special-education director Debra Daly, who oversaw the addition of three classes for disabled students this year. “In the district, (the specialists) are already on staff.”

Special-education students often need the help of psychiatrists, speech pathologists, occupational therapists and other professionals. At private schools, these extras can double the base tuition.

See what I mean by loaded language? “Every little thing” is an extra charge. In the district, the specialists are already on staff, where”little things” like speech therapy and occupational therapy are available on staff. These are hardly “little things”.

Also, it is worth stressing that Speech and Occupational therapy are not generic. I have tons and tons of respect for special educators. Speech therapists are awesome people, wherever they are. But, there are times when the “speech therapist” is just too general for the need. A child with apraxia, for example. This is a child who needs very specialized attention. It isn’t fair to the therapist and it isn’t fair to the student to place such a child with someone who is not highly experienced with exactly this concern. Dyslexia is another area where a generalized special education program may not meet the needs of the individual.

We recognize in medicine that a general practitioner can’t do everything. This takes nothing away from the doctor, but a child who needs a neurologist isn’t served appropriately by a general pediatrician. This is true also for speech and occupational therapists. This is also true for schools in general.

Private schools often fill a niche. In order to provide the appropriate education for a given student, a school district might actually have to pay more than the private school. Why? Because they don’t have the specialists and the experience with that child’s individual needs. A district may not have enough children with those needs to warrant a program which addresses the issues involved. It makes no sense to mix children with very different needs into a classroom, and it makes no sense for a district to create a special program for 1 or 2 children with those needs. A private placement can be both the appropriate and the cost-effective approach for some children.

Moving on in the story:

To justify these costs, private-school administrators point to their low teacher-student ratio, lavish rewards and free school supplies, along with numerous on-site specialists who often earn higher pay than their counterparts on district payrolls. Because of the population they serve, these schools also tend to incur high property replacement and workers’ compensation costs.

I would like to see the school with the “lavish” rewards. “Lavish” isn’t something I’ve seen in any placement, be it public or private. As to “on-site” specialists, I have seen private placements that bring in specialists on contract. Sure, the cost per hour might appear high, but the school isn’t paying all of the overhead for the therapist, either. In the end, this keeps overall costs lower.

The story goes on with a detail about funding that was new to me:

State legislators tried to rein in costs in 1997 when they overhauled special-education funding. Before the change, districts were reimbursed from 70 to 100 percent of the cost of the independent schools, a fiscal incentive that lawmakers feared was influencing placement decisions.

By ending the reimbursements for most students and folding all special-education funding into a block grant, lawmakers hoped to motivate districts to keep as many students in their own programs as possible.

Again, funding issues and policy issues are a driving factor. And, yet, stories tend to focus on the costs of special ed students.

Districts spent $10 billion to teach the state’s special-education students in 2009, roughly double what they spent five years earlier, according to an analysis by School Services of California.

The rising costs are attributable in part to changes in the state’s special-education population, which is skewing toward more severe disabilities.

In Contra Costa, for example, the number of special-education students has remained constant over the past decade, but the percentage of students with relatively manageable “specific” learning disabilities such as dyslexia has fallen.

Autistic and emotionally disturbed students, on the other hand, now make up 12.5 percent of the total, up from 5.5 percent a decade ago.

I wonder how many people misread that. I did at first. I wondered how in the heck Contra Costa county could have “12.5% of the total” with autism or emotional disturbance labels. Of course the answer is that they are talking about 12.5% of the total of special education students. They don’t tell us if the additional autistic or emotionally disturbed students are taking the more expensive private placements.

The implication, at least as I read it, from this story is that there is a shift of students from specific learning disability (SLD) to autism and emotional disturbance. Is this a real shift, i.e. students who would have been labeled SLD now being labeled autistic or emotionally disturbed? While there is much discussion of diagnostic shifts in autism, I have been skeptical of the idea that there is a shift from SLD to autism.

That said, let’s say there has been this shift. There are students today with autism and emotional disturbance labels who previously had SLD labels. One big question left unasked–would those students have been appropriately served under the SLD label?

Also, not every kid with an autism or emotional disturbance label gets an expensive placement. Let’s assume SLD kids are being relabeled as autistic or emotional disturbed. Wouldn’t it be likely that these kids would be on those requiring less intensive special education supports?

The question of the SLD population dropping while the autism rates have climbed has come up a few times before. What I have found in looking at the special ed numbers is that SLD is largely a label for older children. As the population of SLD children has dropped, it is largely from older children as well. On the other hand, the autism population is increasing largely in younger children.

In other words, a shift from SLD–>autism doesn’t make sense.

Consider Contra Costa county. In 2004-05, the peak age for the SLD population was age 15, with 1,094 students. In 2010, the number of SLD students age 15 dropped to 835.

Now look at the autism population. In 2004-05, the autism population was 37. This doubled to 73 by 2009-10. Yep, doubled. BUT, this is only an increase of 36 students.

Autism went up by 36 kids. SLD went down by 354.

Emotional disturbance population was flat at 94 to 95.

(in checking these facts and others, I am reminded of the fact that general education numbers are much easier to compare on the CDE’s dataquest website than special ed numbers)

Moving on–another loaded phrase in the story:

Experts also note that publicly financed private education and therapy have become sought-after benefits as more parents learn about their rights to extra services for disabled children.

“extra services”. How about “appropriate services”?

But later we get to the real message. It isn’t so much special education costs rising as funding dropping:

Former Gov. Arnold Schwarzenegger, for example, vetoed funding for private mental health services for special-education students in the fall. The Mt. Diablo school district, which enhanced its classes for emotionally disturbed students in 2009, estimates that the cut will leave it on the hook for $1 million in private-school costs through the remainder of the school year.

Special-education costs represent a growing threat to schools’ diminishing general education funds, administrators say

We can not diminish the importance of that. Funding is dropping. We need to see how everyone can help out to solve the budget crisis. But we need to do it with accurate information, uncolored by creative language.

Then the story frames the district placements as “best for the students”

School administrators insist that the shift to in-house programs is what’s best for students, as well as district balance sheets.

Special-education children participating in public programs benefit from attending school with siblings and neighborhood friends and from a shorter commute.

“Imagine a kid who has disabilities anyway,” Olson said, “and then you put them on a bus for two hours a day?”

And people on both sides of the issue acknowledge that public schools hold their students to higher academic standards.

That last sentence does not ring true to me. Most parents would eagerly place their child in a placement that has the higher academic standards–that are consistent with the child’s abilities–and the appropriate means to achieve those standards.

The author goes on to give a counterexample to the above assertion that the district placements are better:

“Federal law is idealistic in that it puts pressure on schools to provide the least-restrictive environment,” said Bruce Fuller, a UC Berkeley education and public policy professor. “Now, you have fiscal pressure to mainstream students, but you go into classrooms and see that this may do the child with severe disabilities harm, or it may flatten out the learning curve for other kids.”

We do need to have the discussion of school finances in a time of budget cuts. But we need this to be an honest discussion about the facts. Budgets are being cut. They are being cut because tax revenues are down. Special ed students aren’t the ones who are refusing extra taxes. All students have the right to an appropriate education. All students. Infringe on that right for the minority and it doesn’t bode well for the majority. We need to step up to the plate and make our commitment to education–education for all–a reality. That’s how we get past this problem. Not by singling out special needs children.

The Lancet’s two days to bury bad news

19 Jan

Part three of Brian Deer’s series in the BMJ, The Lancet’s two days to bury bad news, has just been released. As you can imagine from the title, he lays out how the Lancet responded to the news that Brian Deer was publishing a story on the Wakefield team’s article in The Lancet.

Brian Deer’s first article in the Sunday Times was published February 22, 2004. On February 18, Mr. Deer met with the editor of the Lancet and other senior staff for five hours.

I had assumed that when I finished Horton would say that an investigation was needed to untangle these complex matters. There were at least three strands: possible research fraud, unethical treatment of vulnerable children, and Wakefield’s conflict of interest through the lawyer. But within 48 hours, and working with the paper’s three senior authors, the journal was to publish a 5000 word avalanche of denials, in statements, unretracted to this day.

Mr. Deer has investigated what was going on behind the scenes at the Lancet and at the Royal Free. Statements to the press claim by Richard Horton, editor of the Lancet, claim that an investigation was made at the Royal Free which “cleared Wakefield of wrongdoing”. According to Mr. Deer’s investigation, no formal investigation was conducted. Rather, the Royal Free chose Doctors Wakefield, Murch and Walker-Smith, authors of the paper in question, to prepare the response.

The Lancet’s statements came on on Friday, 48 hours after the meeting with Brian Deer and 2 days before his article was set to run in the Sunday Times in an apparent attempt to

“The Lancet editor’s actions have been to regard the allegations . . . as allegations of research misconduct, and following the medical editorial code has carried out an investigation according to agreed guidelines, and intends to publish the result of the investigation pre-emptively,” Hodgson told his UCL superiors in a memo that Friday. “No doubt one—but I believe only one—motive is to safeguard the Lancet’s reputation by getting the riposte in first, and ‘spoiling’ the story.”

The media furor over these revelations led to, amongst other things, the GMC hearing which would eventually strip Mr. Wakefield of his license to practice medicine in the UK:

Wakefield attempted to brazen it out, issuing a further statement to media. “It has been proposed that my role in this matter should be investigated by the General Medical Council,” he said on the Monday. “I not only welcome this, I insist on it, and I will be making contact with the GMC personally in the forthcoming week.”

The same day, a caseworker for the regulator called me from Manchester. Did I have any further information? And two days later, at 12.16 Wednesday, I emailed him the conclusions of my research. I summarised what I had said to the Lancet’s senior staff and pledged my cooperation, in the public interest.

The above sets out the timeline for the onset of the GMC hearing. For those who continue to claim that Mr. Deer was the “claimant”, I doubt even more evidence will dissuade them.

The editorial that the BMJ published along side the Deer article is clear in how serious they take the lack of oversight that went into this research and the initial investigation, placing Mr. Wakefield’s work alongside some of the worst examples of medical research gone wrong in the past century:

Unfortunately, we have been here before. Investigators involved with the 1932 US Public Health Service Tuskegee Syphilis Study deceitfully enrolled subjects with latent syphilis and denied them available treatment for 40 years in order to study the natural course of the disease.(4) As part of a 1963 study to determine the body’s ability to reject foreign cells, patients at the Brooklyn Jewish Chronic Disease Hospital were injected with live cancer cells without their knowledge and without oversight from the institution’s research committee.(5) From 1944 to 1974, the US government conducted several radiation experiments, some of which involved the use of non-therapeutic radioactive tracers in children and increased their risk of developing cancer.(6) And in 1981, it was discovered that John Darsee, a clinical investigator at Harvard Medical School, had fabricated data in several experiments published in high profile medical journals that ultimately culminated in widespread retractions of his work and a ban from funding from the National Institutes of Health for 10 years.(7) These experiments have since become symbolic of unethical research on human subjects and of scientific misconduct, and there is little doubt that Andrew Wakefield’s 1998 study will too.(8)

They go beyond this and ask the pertinent question–how did this happen and how do we avoid it in the future?

How could this happen again? To answer this, perhaps we need to focus less on the people involved and more on the defects within the biomedical research enterprise that permit such egregious misconduct. After all, Wakefield was able to circumvent the existing safeguards established to ensure the responsible conduct of research, the protection of research subjects, and the accurate and honest publication of research findings.

The editorial discusses that “research incidents” like those surrounding Mr. Wakefield should be framed as adverse events and attacked similarly. It is a model which will no doubt be criticized by those who see autism as an adverse event to MMR, but it does lay out a framework of how to respond.

The editorial concludes:

Thirteen years later, we are only now beginning to understand the root causes of the multiple system failures involved in the Wakefield incident. We must strengthen our ability to investigate research adverse events. We need to use the tools and techniques available to protect the safety of patients in the clinical realm to protect research subjects. We also need to rethink and reform our customs and culture. The disastrous impact that Wakefield’s study has had on vaccine coverage, recrudescence of disease, public trust, and, most of all, science, requires that we do so in haste.

As we leave this subject, it is worth looking to the words of Andrew Wakefield himself. Words which resonate in a manner Mr. Wakefield did not intend, but resonate nonetheless:

The medical science, the medical system, the scientific system has failed you, for which I am ashamed.
–Andrew Wakefield, May 26, 2009.

He meant the statement as an accusation, that he was ashamed on behalf of the rest of the system, not his own missteps. I find the statement clearly ironic. He is correct, the medical science, the medical system, the scientific system has failed us. His efforts in the Lancet (and elsewhere) are an example of that failure. They do not stand outside of it.

Science has a very difficult choice. To choose between fidelity or collusion.
–Andrew Wakefield, May 26, 2009.

Too right, Mr. Wakefield. Too right. Of course, science had that choice in 1998 as well. You made the wrong choice.

Andrew Wakefield’s erasure from the UK medical register is complete

19 Jan

This just isn’t Andrew Wakefield’s week. Last year the General Medical Council (GMC) in the UK found Andrew Wakefield guilty of multiple counts of improper conduct. These include subjecting disabled children to invasive tests that were not in their clinical interest, placing children in a research program without first obtaining the safeguards of ethical approval, financial and commercial conflicts of interest as well as other breaches of ethical conduct.

Here is one example paragraph from the sanction of Mr. Wakefield:

With regard to nine of the eleven children (2,1, 3, 4, 6, 9, 5,12 and 8) considered by the Panel, it determined that Dr Wakefield caused research to be undertaken on them without Ethics Committee approval and thus without the ethical constraints that safeguard research. Ethical constraints are there for the protection both of research subjects and for the reassurance of the public and are crucial to public trust in research medicine. It was in the context of this research project that the Panel found that Dr Wakefield caused three of these young and vulnerable children, (nos. 3, 9 and 12) to undergo the invasive procedure of lumbar puncture when such investigation was for research purposes and was not clinically indicated. This action was contrary to his representation to the Ethics Committee that all the procedures were clinically indicated. In nine of the eleven children (2,1, 3, 4, 9, 5,12, 8 and 7) the Panel has found that Dr Wakefield acted contrary to the clinical interests of each child. The Panel is profoundly concerned that Dr Wakefield repeatedly breached fundamental principles of research medicine. It concluded that his actions in this area alone were sufficient to amount to serious professional misconduct.

The sanction includes the determination that Andrew Wakefield should have his name erased from the medical register:

Accordingly the Panel has determined that Dr Wakefield’s name should be erased from the medical register. The Panel concluded that it is the only sanction that is appropriate to protect patients and is in the wider public interest, including the maintenance of public trust and confidence in the profession and is proportionate to the serious and wide-ranging findings made against him.

Mr. Wakefield had a period of time to appeal to the High Court. I have word from Brian Deer, the journalist who first broke the story of the Mr. Wakefield’s misdeeds, that the time has passed and the erasure is now effective.

For those who want visual confirmation, here is the GMC’s registry page on Mr. Wakefield. (click to enlarge)

Bernie Marcus Sides with Autism Scientists in British Study

19 Jan

I’ve known for a while that Home Depot included autism coverage in their employees insurance benefits. I must admit I didn’t know that their co-founder was so involved with the autism community. Bernie Marcus, co-founder of Home Depot, founded an autism center in Atlanta: the Marcus Autism Center.

Well, Mr. Marcus has stepped forward during the high media attention surrounding the BMJ articles discussing research fraud by Andrew Wakefield. The story, Marcus Sides with Autism Scientists in British Study, is from Channel 11 in Atlanta:

http://c.brightcove.com/services/viewer/federated_f9?isVid=1

I admit that when I read the title of the news piece, I thought he was siding with the “scientists in the British study” as in siding with Mr. Wakefield. No, he is siding with the scientists

“You have two schools of thought, and then you should have this scientific group in the middle that doesn’t have any political agenda that just cares about the kids,” Marcus said. “I’ve tried to associate myself with that group of people that doesn’t necessarily agree or disagree.”

and

“Everything that comes back is the same,” he said. “They cannot find any connection between immunization and autism.”

Marcus has been directly involved in Autism research and treatment for more than 20 years. He founded and funded the nation’s leading center for autism treatment. Now in its 10th year, the Marcus Autism Center has already treated more than 30,000 youngsters, as well as providing family support and counseling.

It’s great to hear someone taking a stand but in a very down-to-earth, non confrontational manner.

Dowsing for Data

18 Jan

The BMJ has podcasts (something I was unaware of). This week’s edition is called “Dowsing for Data“. They have input from Tom Jefferson of the Cochrane Collaboration on a subject aside from the Wakefield articles which have been published in the past few weeks. In the second part (starting at about 11:30 into the podcast) the BMJ discusses with Brian Deer about the articles.

They discuss the history of the story, how he got started to do background work for a TV program in 2003. He discusses Mr. Wakefield’s aborted attempt to sue Brian Deer for defamation, which caused 2 years of litigation. It was during this period that Mr. Deer became more convinced that the Lancet article “could not be rationally explained”. Since the information was clinically confidential information at the time, Mr. Deer could not take the information into the public domain. This changed with the GMC hearings and, especially the hearing transcript hearings. This allowed for fact checking of Mr. Deer’s articles. He discusses how the story ended up in the BMJ. Also, the advantage of placing this in the BMJ makes it clear that a greater level of fact checking has been performed. He answers the critics who say that this is more journalism than science, questioning the placement in the BMJ. Of course, Brian Deer is a journalist, not a doctor or researcher. But, that this could be done with the accuracy and rigor of a science paper in a more narrative form.

Chatting with Seth Mnookin

18 Jan

I don’t want to call what follows an interview as:

a) I’m not that grand
b) It was more friendly than that

So what follows was a meandering email chat Seth and I had about the release of The Panic Virus (Amazon UK, US and CA) and the content in it.

KL: You mention in the book that one reason for writing it was that as a new dad you were keen to explore the issue of vaccination in relation to autism. Do you feel that you’ve come away from the writing process with a greater personal (as a dad) idea(s) of what the vax/anti-vax opposing beliefs are?

SM: Actually, I started the book before I was a father…and before my wife was pregnant. I think it was one of the reasons I was so curious about the topic: I hadn’t experienced the debate on a personal level and so I found it hard to understand how different people I respected could disagree so strongly about the facts.

I’m not sure whether this is a result of the writing/research process or of my becoming a dad, but I feel like I have an understanding of where both sides are coming from–and why they get so frustrated. I can’t pretend to know what my reaction would be if I believed that vaccines had harmed my child.

KL: Do you feel you share the sense of frustration that ‘pro-vaccine’ people have now the book is completed?

SM: That’s a hard question to answer. Overall the situation is extremely frustrating. I feel frustration that the issue has been so poorly covered by the media, and I think our handling of the story has as much as (or more than) anything else to do with where we’ve ended up. I’m also frustrated by the handful of self-anointed experts, like Bob Sears, who give the impression that heeding their (or parents’/patients’) instincts are the proper way to go about dealing with medical decisions.

But I think one of the things that makes this such an intractable issue is that there are not a lot of opportunities for people on opposing sides to sit down and have an actual, human-to-human conversation — at this point emotions are so pitched and the stakes are so high (or feel so high) that a sort of bunker mentality has set in. I was lucky: I cam to this without a horse in the race, as it were, so I was able to have what I think were open and honest conversations with people that I know disagree strenuously with the conclusions I ultimately arrived at.

KL: Thats an interesting thought. At what point in writing the book did you think ‘I know I’ve reached my own conclusions’?

SM: I don’t think there was one point at which I felt like I’d made up my mind about the issues that came up because it didn’t feel to me that there was any one single issue. It’s part of what I found interesting and bewildering about this whole thing. I went to an AutismOne conference in Chicago, and after watching a presentation by Mark and David Geier, I knew I had some real concerns about their approach to treatment. There were some other presentations I saw that I knew from the outset were just factually incorrect, and there were claims about government conspiracies to poison children that I found to be…well, I guess unconvincing is a good word to use.

But I certainly didn’t feel like I knew enough at that point to say whether some of the other treatments that came up had validity, and I didn’t feel like I could say with any confidence whether some of the theories regarding causality had any grounding in fact. There’s a lot of very complicated science involved, so when David Kirby stood in front of an auditorium and talked about mitochondrial disease and genetic susceptibility, I hadn’t done enough research at that time to know whether what he was saying made sense or not.

I did find the all-or-nothing quality to the debate to be disturbing. At AutismOne, it was made very clear to me that I’d be judged in absolutes: If I expressed skepticism about the Geiers, the assumption was that I didn’t think anything else that was being discussed at the conference had any type of validity.

I was open about this when I spoke with people. If I was interviewing someone and the Geiers came up — and I don’t mean to pick on them, but they’re a good example of this because they’re such prominent figures — I’d say that I found their approach to science unconvincing.

I think that there is, among some people at least, a feeling that it’d be better for everyone involved if that with-me-or-against-me attitude wasn’t quite so prevalent. I spoke with Jane Johnson about Andrew Wakefield’s departure from Thoughtful House after the GMC decision was released early last year. I really like Jane — she’s smart and thoughtful and very generous with her time and every time I spoke with her she made me think about things in new ways. And when I asked her why Wakefield had left she didn’t say that it had anything to do with the contents of the GMC ruling, which I really respected: There was not really any new information in the report. Instead, she said that he had become too much of a lightening rod and that Thoughtful House wanted to do more work with Texas medical authorities. I don’t want to misquote her, and these aren’t her words, but she essentially went on to say, This doesn’t all need to be about vaccines. There’s lots of other work to be done here that has nothing to do with vaccines. That’s an attitude I wish more people had.

KL: I know you didn’t set out to write a book about *autism* as such but it seems to attract authors – do you think you’ll always maintain a passing interest in the autism/vaccine issue now?

SM: I think I’ll maintain more than a passing interest in the issue. It’s hard to learn about it – and certainly hard to write about it – without become passionately involved in it, so it’s hard to imagine my not continuing to have some connection to a lot of these issues moving forward.

Increase in NIH autism projects over the past decade

18 Jan

We hear repeatedly how research interest in autism has climbed in the past decade. I was looking through the NIH database of autism research projects and I decided to check on the number of projects that the NIH has funded by year.

Here are those data: research projects by fiscal year. In the past 10 years, the number of projects funded per year has increased by about 3x or 4x.

Quantity isn’t the same thing as quality by a long shot. But I do find this very encouraging.

The NIMH Center for Collaborative Genetic Studies

17 Jan

I follow the Director’s blog at the National Institute of Mental Health (NIMH). A recent post is titled Looking forward to 2011

You probably won’t be surprised that I did a search for “autism” in the text. I only found one hit:

Genomics and Other High Throughput Technologies

What happened with computers in the last decade – faster, cheaper, better – is happening with technologies to sequence the human genome today. Once cost prohibitive, the price of DNA sequencing has dropped drastically in the past several years. Soon, whole genome sequencing will become the norm in research. With such precise methodology, this will be the year for discovering many new genetic variants associated with mental disorders. To expedite our discoveries, it will be key to share high quality data produced by these sequencing efforts and to build the computational resources to analyze the impending avalanche of data. The NIMH Center for Collaborative Genetic Studies has become the world’s largest repository for DNA samples from individuals with mental disorders and their families. In 2011, with samples from this repository, along with consortia developed with investigators around the globe, we should get our first comprehensive view of the genomic risk for autism, schizophrenia, and bipolar disorder.

emphasis added.

It’s an interesting hit. First, the director of NIMH is in a position to know what research is in the pipeline. If he says 2011 should give us our first “comprehensive view” of the genomic risk, I’m willing to bet that something will come out this year. More importantly, I was unaware of the Center for Collaborative Genetic Studies.

Leave aside the genetics part of this for the moment and just take a look through the site. It is a great idea. Making data from multiple investigations available to other researchers.

Here’s the “scientific mission”:

Scientific Mission

Given the major public health implications of identifying genes that contribute to the susceptibility for severe brain disorders, the National Institute of Mental Health (NIMH) has funded a Human Genetics Initiative. The goal of this Initiative is to study individuals affected with schizophrenia, bipolar disorder, or Alzheimer’s disease and their relatives, in order to establish a national resource of clinical/diagnostic information and immortalized cell lines for DNA extraction. These data and biomaterials are distributed to qualified investigators in the wider scientific community, for use in research on the genetic basis of these disorders. The NIMH Human Genetics Initiative is supported by the Office of Human Genetics & Genomic Resources in NIMH’s Division of Neuroscience & Basic Behavioral Science (DNBBS).

Progress in scientific understanding is best achieved by the free and open exchange of knowledge, data, and ideas. The NIMH Human Genetics Initiative was founded on the principle that timely access to primary data and biomaterials for human genetic research may stimulate research and development and maximize the benefits afforded to individuals affected with these disorders and their family members. Progress in these efforts is paralleled by growing interest throughout the scientific community in having timely access to the information and resources that may speed the understanding of disease etiology, refinement of diagnostic systems, and development of novel therapeutic agents and preventive interventions.

The autism page for the site gives a brief statement and links to the autism pages. You can see what papers have already come out of the autism consortium, including many available for download. They have data on sibling pairs, where genetic data on families with families with 2, 3, 4, even 5 ASD kids are included. They are up to revision 7 on the data. You can see what data are in the pipeline in the future releases page. There are a lot of data in the works, with a lot of it coming on line in the next year or 2.

The idea is great. I’d love to hear from researchers as to how well it really works. But the data, the raw data, are being made available to multiple researchers. There are other projects like this out there in autism research.

Salon retracts RFK Jr. article

16 Jan

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

Well done Salon.

Salon retracts Robert Kennedy’s “Deadly Immunity”

16 Jan

One of the worst pieces written claiming that mercury caused an autism epidemic was the piece “Deadly Immunity” by Robert Kennedy Jr. Salon.com and Rolling Stone co-published the piece. It was immediately met with criticism and corrections: multiple correction pieces were published.

Salon has decided to review the piece and decided that corrections were not enough. They’ve pulled the piece from their site. Here’s the statement.

Correcting our record
We’ve removed an explosive 2005 report by Robert F. Kennedy Jr. about autism and vaccines. Here’s why

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged here) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

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