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Upcoming Joint Conference Call of IACC Subcommittee for Planning the Annual Strategic Plan Updating Process and IACC Services Subcommittee – June 18, 2010

14 Jun

I just received this notice. The Interagency Autism Coordinating Committee (IACC) prepares the “Strategic Plan” for the government’s efforts in autism research and is charged with advising the Secretary of Health and Human Services on issues involving autism

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process and the IACC Services Subcommittee will be holding a joint conference call to discuss plans for a fall 2010 IACC Scientific Workshop on the topic of ASD services on Friday, June 18, 2010 from 10:00 AM – 12:00 PM ET.

The purpose of the conference call is to discuss plans for a fall 2010 IACC Scientific Workshop on ASD services research.

Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. This phone call may end prior to or later than 12:00 PM, depending on the needs of the subcommittees.

To access the conference call:

USA/Canada Phone Number: (800) 369-3340
Access code: 8415008

The latest information about the meeting can be found at: http://iacc.hhs.gov/events/2010/subcommittee-for-planning-the-annual-strategic-plan-updating-process-mtg-announcement-June18.shtml

You received this announcement because you attended a previous meeting of the IACC or joined the IACC mailing list. We apologize for duplicate notices. For more information on this meeting, or the IACC, please visit: http://iacc.hhs.gov/

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

Please note: The meeting may end prior to or after 12:00 PM, depending on the needs of the committee.

Andrew Wakefield in the Sunday Telegraph

14 Jun

Andrew Wakefield has been much in the news lately. “Much” is a relative term. He hasn’t been in the news to the level of his hey-day when the his MMR hypothesis was new and given some credibility. But with the decision of the GMC to remove him from the medical register, he has been back in the news. Mr. Wakefield apparently decided to ride this expected wave of publicity by timing his book to coincide with the decision.

Mr. Wakefield’s book tour was not very extensive, and involved some minor and strange outlets, including “Coast to Coast“, a late-night American radio show that bills itself as “Coast to Coast AM – UFOs, strange occurrences, life after death and other unexplained phenomena. Overnight talk radio with daytime ratings”

His tour has not gone unnoticed by the mainstream media. The Sunday Telegraph has a story about him (unfortunately not online as yet):

Needle and Dread
In Britain he’s been struck off and widely discredited. In the US Andrew Wakefield, MMR Pariah, has been reborn–as an unapologetic figurehead for the ‘anti-vaccine’ movement. It’s a long way from Harley Street, reports Alex Hannaford.

If that title isn’t clear enough, the article opens with a picture of Mr. Wakefield with the caption: “Poster boy Andrew Wakefield continues to spark religious-like fervour among supporters

Once, Mr. Wakefield was able to obtain favorable press at least somewhere in the mainstream press.

Times have changed.

Functional impact of global rare copy number variation in autism spectrum disorders

14 Jun

A recent study by the autism genome project has been gathering a lot of publicity. Kev interviewed one of the principle investigators. But, we haven’t really presented a discussion of the science here. With that introduction, you might be surprised to read: and that isn’t going to change. A few good presentations have been written on this paper. Far better presentations than I can do. So I will refer you to:

The Simons Foundation SFARI blog has Autism marked by copy number changes in coding regions. (note: I added this link after the initial publication of this blog post)

P.Z. Myers in Autism and the search for simple, direct answers and Respectful Insolence with, More evidence for a genetic basis for autism.

The paper itself is Functional impact of global rare copy number variation in autism spectrum disorders, appears in the journal Nature.

Here is the abstract:

The autism spectrum disorders (ASDs) are a group of conditions characterized by impairments in reciprocal social interaction and communication, and the presence of restricted and repetitive behaviours1. Individuals with an ASD vary greatly in cognitive development, which can range from above average to intellectual disability2. Although ASDs are known to be highly heritable (~90%)3, the underlying genetic determinants are still largely unknown. Here we analysed the genome-wide characteristics of rare (<1% frequency) copy number variation in ASD using dense genotyping arrays. When comparing 996 ASD individuals of European ancestry to 1,287 matched controls, cases were found to carry a higher global burden of rare, genic copy number variants (CNVs) (1.19 fold, P = 0.012), especially so for loci previously implicated in either ASD and/or intellectual disability (1.69 fold, P = 3.4?×?10-4). Among the CNVs there were numerous de novo and inherited events, sometimes in combination in a given family, implicating many novel ASD genes such as SHANK2, SYNGAP1, DLGAP2 and the X-linked DDX53–PTCHD1 locus. We also discovered an enrichment of CNVs disrupting functional gene sets involved in cellular proliferation, projection and motility, and GTPase/Ras signalling. Our results reveal many new genetic and functional targets in ASD that may lead to final connected pathways.

Interview with Stephen Scherer

11 Jun

Stephen Scherer is co-author on the recent paper ‘Functional impact of global rare copy number variation in autism spectrum disorders‘. I caught up with him via email to ask a few questions:

1) What is the ‘bottom line’ message readers can take away from your work?

I am always frustrated when I hear at the end of most news stories…’and we don’t know what can cause autism’. Data from the past few years including our new study show alterations in genes can cause autism. We have not found all of the genes yet, and not all autism cases can be accounted for (the genetics can be complex) but genes can cause autism. For the specialists, through our new study we show either de novo or rare inherited copy number variations as one form of genetic alteration involved in autism. The genes affected are often linked together in a connected functional pathway and may of these molecules dictate how brain cells (neurons) develop and communicate. Some of the autism genes we found have already been found to cause intellectual disabilities, which is not entirely surprising since many individuals with autism also have these challenges.

2) How does your paper tie in with other gene/autism studies?

We validate many previous findings, but also find dozens and dozens of new autism risk genes. Our data furthers the hypothesis that rare genetic alterations contribute much more relative risk to developing autism than common genetic variations.

3) What should future researchers use your study for in terms of direction to take their own work?

I think one of the most important impacts of the study is the design itself. Nature really wanted us to include the Figure 1, which outlines the design and analysis. CNV studies are still quite tricky to do and the data has to be of the highest quality to make sense of it. I think our study on autism will set the standard for all other studies going forward, so they should follow it. Moreover, many of the functional pathway studies published before may have been either underpowered, flawed by low resolution arrays or high false discovery rates, or incomplete study designs. We spent alot of time thinking of how to best do this properly so if others are interested they should read the Supplementary Information carefully. Use it as a guide. Finally, for the functional biologists look at the long list of genes we present in the Supplementary Information since they may find their favorite gene to be an autism candidate gene!

4) How difficult was it managing the input from such a very large amount of co-authors?

The Autism Genome Project has some 120 scientists from 11 countries involved (see the authorship list). We selected a ‘writing team’ comprised of genome scientists, statisticians, medical geneticists, psychiatrists and developmental pediatricians. Interesting, everyone saw their own story in the data. I pretty much new in advance what I wanted to see in the final manuscript so much of my job was bring focus to the many other good ideas (note that there are five other papers spinning out of this larger study presenting some of these other data and interpretations). In took about 12 solid months of analysis of the data, three months of writing and editing, alot of cursing, and then submission to Nature (with even more cursing). The review time from submission to publication took ~six months. This was the hardest for me (except other than constantly changing the author list….and affiliations). The reviewers were very very thorough and Nature can (rightfully) be very demanding. In the end we are very proud of the manuscript. Dalila Pinto who is the first author and a post-doc in the lab was the driving force behind the analysis and deserved a lions-share of the credit. Would I do it again? I’ve had two Senior Author papers in Nature this year, which have been very draining. But I would do it again!

NIH funded research includes search for possible vaccine-autism link

11 Jun

Much time is spent discussing whether a study of autism and vaccination status could or should be undertaken. Generation Rescue has been trying to get funding for such a study, but their proposal is weak and vague. The question arises, why doesn’t any group with real strong credentials consider this project?

Would you be surprised to find out that it is already ongoing? And that the principle researcher is someone with mainstream credibility?

It turns out that potential environmental causation of autism, including vaccines, are a part of a study which (if all went according to schedule) just finished the data collection phase. The NIH funded project, GENE-ENVIRONMENT INTERACTIONS IN AN AUTISM BIRTH COHORT, was headed by Prof. Ian Lipkin of Columbia University. The project started in 2003 and was prospectively monitoring a cohort of children diagnosed with ASD’s and another cohort of controls.

The project is discussed below:

Reports of increasing prevalence of autism spectrum disorders (ASDs), a set of highly genetic conditions, are intensifying interest in the role of environmental exposures, including infectious, immune, and toxic factors. Retrospective studies exploring associations between environmental factors and ASDs are compromised by selection bias, small sample sizes, possibly invalid diagnosis, and absence of biologic measures. This prospective study will employ an unselected birth cohort of 75,500 in which cases are ascertained through screening of the entire population, diagnoses established using uniform procedures, extensive histories and clinical data obtained, and biologic samples collected serially throughout pregnancy and early childhood. The application of high throughput laboratory assays to derive maximal information from developmentally-influenced, finite, and nonrenewable biologic samples, and inclusion of early screening and diagnostic assessments, will permit an unprecedented, rich view of the longitudinal trajectory and nascent signs and symptoms of ASDs, facilitate discovery of biomarkers, and afford unique insights into the role of gene:environment interactions in ASD pathogenesis. Specific aims are to: (1) establish the autism Birth Cohort (ABC) through ascertainment of cases of autism spectrum disorder (ASD, N=150-233) and selection of controls (N-1000) from the Norway Mothers and Child (MoBa) cohort; (2) examine biologic pathways that may predispose to ASD, through evaluation of immune, endocrine, and neuroregulatory factors in mothers during early gestation or at birth and in children, at birth or 30 months postnatal; (3) identify environmental factors that may be directly or indirectly associated with ASD, including pre- or postnatal infection, vaccination, very low birth weight or other obstetric risk factors in which infections are implicated, dietary and/or environmental exposure to methylmercury; (4) describe the natural history of clinical, anthropometric, and neurobehavioral features of ASD; and (5) explore genotypic influences that may be directly or indirectly associated with ASD by testing associations of ASD and/or its endophenotypes with family history of autoimmune disease or selected candidate genes, and investigating conditional gene-environment effects using antecedent factors found to influence ASD risk.

Emphasis added.

Prof. Lipkin was a member of the team which looked at children with gastrointestinal disorders, Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study. Amongst other findings, they found that (a) regression was not correlated with MMR vaccination and (b) persistent measles infections are not present in the guts of autistic kids more than in non-autistic kids. Basically it was the study that most closely replicated some of Mr. Wakefield’s team’s efforts and showed that Mr. Wakefield’s results were not reproducible.

Another study, THE CHARGE STUDY: CHILDHOOD AUTISM RISKS FROM GENETICS AND THE ENVIRONMENT, includes “vaccines” in the project terms. This study has been funded to the tune of about US$5,000,000 and is headed by Prof. Irva Hertz-Picciotto, who has stated that vaccines should be considered for research into autism causes.

If you are wondering if mercury is being investigated, AUTISM IN A FISH EATING POPULATION continues study on methyl mercury exposures in the Seychelles. Also, the University of Washington has a study ongoing, NEUROIMMUNOTOXICOLOGY OF MERCURY. Johns Hopkins has a study now going on 4 years, GENETIC SUSCEPTIBILITY TO MERCURY-INDUCED IMMUNE DYSFUNCTION IN AUTISM & ASD. Also, the University of Texas has a study, EPIDEMIOLOGICAL RESEARCH ON AUTISM IN JAMAICA, which also is monitoring heavy metal exposures.

I have two questions. First, why do groups like Generation Rescue, SafeMinds, the National Autism Association and TACA claim that vaccine-autism and mercury-autism research isn’t being done? They are represented on government committees. Second, what do they hope to learn from doing their own study that isn’t going to be done better and sooner by other groups?

Joint Letter on Cross-Disability Representation in Designating Medically Underserved Populations

10 Jun

A very broad coalition of disability groups has sent a letter to the secretary of the U.S. Department of Health and Human Sevices, Kathleen Sebelius. Amongst those groups is the Autistic Self Advocacy Network (ASAN). A statement from ASAN in an email announcing this letter is below:

In the United States, people with disabilities often face barriers to obtaining adequate health care, and one of the major difficulties is a lack of adequately trained primary care providers. The Autistic Self Advocacy Network has signed a joint letter from cross-disability organizations calling on the U.S. Health Resources and Services Administration to include representation of the cross-disability community in designating medically underserved populations. The letter has been published on the main ASAN website

The letter in full is reproduced here:

June 9, 2010

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that “as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women’s Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV – The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: http://www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

Reading while black and autistic leads to arrest

10 Jun

Reginald Latson, an 18-year-old Virginia man with Asperger’s syndrome, faces one count of malicious wounding of a law enforcement officer, one count of assault and battery of a law enforcement officer, and one count of knowingly disarming a police officer in performance of his official duties, following an incident in a high school parking lot.

Stafford County deputies received a report of an armed person outside of a library, which prompted a lock down of six schools in Stafford County, including a high school.

From WJLA in Washington, DC:

Stafford County Sheriff’s Office spokesman Bill Kennedy says it all began at 8:38 a.m. with the report of an armed person in the parking lot of a library across from Park Ridge Elementary. The threat prompted a lockdown of six schools in Stafford County, including the high school, which is separated from the library and elementary school area by a wooded area.

Kennedy says deputies saturated the area after the call. About 20 minutes later, a Stafford High School resource officer spotted a man matching the description of the lookout. While the man was being questioned, he became irate and attacked the school resource officer, who is also a sheriff’s deputy, investigators said.

The man repeatedly struck the deputy, who pepper-sprayed the man, according to the Sheriff’s office. During the struggle, the assailant was able to wrest the pepper spray for the deputy and sprayed him, investigators said.

The man then fled. The deputy, Thomas Calverley, suffered head laceration, cuts, abrasions and a broken ankle. He was scheduled for surgery on the ankle this afternoon.

Latson was located in the woods about 45 minutes later by a canine officer and his dog, Vader. Investigators never found a gun, and now say the initial caller never actually saw a weapon.

Latson is currently being held at the Rappahannock Regional Jail under no bond.

You can read more about the case at this website started by Neli’s family.

“The actions that were taken by the police that day were excessive in the least and grossly mishandled,” writes Neli’s mother. “Someone says I see a suspicious black male and he “could” have a gun, while all my son was doing was sitting in the grass at the library. And you shut down six schools and go out on a manhunt for this dangerous black man who was sitting in the grass. Anyone reading this story can read between the lines and see that this just doesn’t add up.”

You can read the Stafford County Sheriff Dept. news release here.

Another autistic kid in the news

9 Jun

I have to ask–did that make you cringe? Are you thinking, “Now what?” Here’s the story: a kid was choking in a school cafeteria. A teacher tried to help but was failing. In rushed in Marken Suaza, a 9 year old diagnosed with Asperger syndrome, to perform the Heimlich maneuver.

Story is here, Boy With Autism Saves Choking Friend.

Somehow that story hit a good spot today for me.

Baby killer blames autism

8 Jun

This is the sort of story I find it nigh on impossible not to get angry and scared about. Stephanie Rochester allegedly killed her 6 month old child because she thought he might have autism.

According to an affidavit seeking her arrest, Rochester wanted to commit suicide but didn’t want to “burden her husband” with the potentially autistic boy.

There aren’t words for how sickening this is. I feel personally attacked by this woman that she should attempt to make autism responsible for the death of her child rather than shouldering the blame herself. My own autistic child and step child and all other autistic people deserve better than this cheap attempt at buck passing.

And really one has to examine the social atmosphere this kind of thing takes place in. Who gave this person and her attorney the idea that autism is such an awful awful thing that a jury might see past her culpability and accept that it was OK to place blame on autism itself? I know I have my own ideas about this.

I was moved by the love of a mother must have for her child to take his life rather than him fall upon a society that really didn’t give a damn.

Tom Insel faces scrutiny

8 Jun

Dr. Tom Insel is the director of the U.S. National Institute of Mental Health (NIMH) and also chairs the Interagency Autism Coordinating Committee (IACC). As such, he has been placed under a lot of scrutiny and criticism from some sectors of the autism community.

He now faces scrutiny from other quarters.

Science Insider has a story, NIH Conflicts Overhaul Bumps Up Against Psychiatry’s Old Boys Network. The story is also in the Chronicle of Higher Education as As He Worked to Strengthen Ethics Rules, NIMH Director Aided a Leading Transgressor.

The scrutiny involves Dr. Insel’s actions in possibly supporting a former colleague from Emory Universiy, Dr. Charles B. Nemeroff, in his effort to find a new position at the University of Miami. Dr. Nemeroff was sanctioned at the time for conflict of interest issues, including a two year ban by Emory on applying for NIH funding.

From the Chronicle:

A yearlong effort by the National Institutes of Health to toughen its policies against financial conflicts of interest was led by an administrator who quietly helped one of the most prominent transgressors get hired by the University of Miami after a decade of undisclosed corporate payments led to his departure from Emory University, a Chronicle investigation has found.

The administrator, Thomas R. Insel, director of the National Institute of Mental Health, also encouraged the researcher, Charles B. Nemeroff, to apply for new NIH grants, even though Emory had agreed on its own to restrict Dr. Nemeroff from NIH grant eligibility for two years. The NIH also allowed Dr. Nemeroff uninterrupted eligibility to serve on NIH advisory panels that help decide who receives NIH grant money.

From Science Insider:

Nemeroff then applied for a job at the University of Miami’s medical school. According to e-mails that The Chronicle obtained, the school’s dean, Pascal Goldschimidt, e-mailed Insel in July 2009 to ask for a “confidential opinion” regarding Nemeroff. Insel replied that he could not provide a written recommendation but could talk to Goldschmidt informally by phone, which he apparently did, according to the e-mails. (Goldschimdt told The Chronicle he wanted to be sure Nemeroff could receive NIH grants and that Insel assured him “that Charlie was absolutely in fine standing.”) At the time, Insel co-chaired a new NIH committee to revise federal COI regulations; NIH proposed changes in those rules last month.

Addendum:

Dr. Insel discusses issues involved in the above in his blog post NIMH – Reducing Conflict of Interest, Ensuring Public Trust. Given that his post in to a U.S. Government website, I don’t see a problem reproducing it in whole here:

Over the past five years, there have been several psychiatrists implicated in financial conflicts of interest (fCOI). Some of these psychiatrists were funded by NIMH. Two questions have been raised: is fCOI a greater problem for psychiatrists than other medical specialties? And is NIMH part of the problem or part of the solution? I addressed the first question in a recent JAMA commentary.

The second question – what is NIMH’s role? – is raised by allegations that NIMH has not taken this problem seriously and that as Director, I have failed to take action against those who have been accused. These allegations are particularly surprising to me because the Institute has done so much to ensure that the research we fund meets the highest standards of integrity—free of bias or hidden agendas. Beginning in August 2008, NIMH established a new internal process to review all grants prior to funding and all nominees for advisory panels prior to appointment to identify potential fCOI issues. When concerns arise, we require the institutions involved to provide additional information regarding compliance with the current fCOI Regulations to ensure the fCOI has been managed, reduced or eliminated.

The Institute is taking additional steps to preserve the integrity of NIMH-supported research. NIMH is developing a training course to help those in academic psychiatry understand the reasons for Regulations regarding fCOI.

In addition, as part of our mission, NIMH supports research to study problems in the use of evidence based practices, such as the continued under-utilization of psychosocial treatments and the ways by which certain medications may become overused.

Concurrently with the Institute’s aggressive stance to address fCOI, NIH (with NIMH in a leading role) has proposed a new approach towards strengthening Federal Regulations. A Notice of Proposed Rulemaking was published on May 21, 2010 outlining a more rigorous approach to investigator disclosure, management of conflict by universities, and federal oversight. Available for public comment until July 20, 2010, we urge our many partners to review and comment on these proposed revisions to the current fCOI Regulations. We are hopeful that with strengthened Regulations, the Institute will be more efficient and proactive in minimizing potential sources of bias in research.

There is an additional question being asked of those who have violated existing policies: Will they be permitted to apply for grants? Any scientist can apply for NIH funding unless he or she has been “debarred”, the result of an official process via the HHS Office of Research Integrity. Absent this, all applicants must be treated fairly and equally.

NIMH has a critical national mission: to transform our understanding and treatment of the nation’s most disabling disorders (WHO 2008). This will require the best minds from government, academia, and the private sector working for the public good and not for personal gain. As the steward of public funds at NIMH, I am committed to ensuring that we support science that is unequivocally in the public’s interest, unambiguously supported by the public trust.

The second-to-the-last paragraph addresses one issue raised in the Chronicle story–that of the status of Dr. Nemeroff’s ban from applying for NIH grants. He was banned by his University, Emory, not the NIH. Dr. Insel informed U. Miami that Dr. Nemeroff was not banned or “debarred” by NIH.

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