View Full Version : The Gillberg Affair and the destruction of long term data on ADHD


kilted_scotsman
10-02-07, 01:24 PM
Hi All

Just wandering about the net as per usual and found this.

The destruction of 15 years worth of scientific data on the development of children with ADHD symptoms. Makes you want to weep.

http://www.bmj.com/cgi/content/full/335/7616/370

For those outside the UK, the BMJ (British Medical Journal) is the pre-eminent peer reviewed publication on general medical matters in the UK.

kilt

QueensU_girl
10-02-07, 01:42 PM
I think there's another side to it, however. People are concerned that these kids were made (social factors) rather than born.

It is of concern that people want to turn kids who are suffering from society's woes into "diagnoses".

People don't want to see the link between things like neglect and trauma going on to cause learning problems. (Government would seem especially liable.)

The Toronto Star newpaper just had an article yesterday about the learning problems of children in homeless shelters. Severe stress causes learning difficulties. (Although not ALL of them.)

What's confusing about this study too is that these kids had other neurological problems: e.g. Tourette's, Asperger's, neurological deficits, motor coordination problems, etc. Hard to sort out the wheat from the chaff, there.

kilted_scotsman
10-02-07, 02:21 PM
You will note that I said ADHD symptoms and not a diagnosed with ADHD.

QueensU_girl
10-02-07, 06:25 PM
I stand corrected. See what not having coffee does to me? <G>

Cheers,

Emma :)

ProcrastN8R2
10-03-07, 10:24 PM
Strange story. But, I couldn't read all of it - just too long! Can you summarize?

kilted_scotsman
10-04-07, 03:03 PM
Swedish Researchers doing longitudinal study of the development of children with ADHD like symptoms were asked to release the raw data to other researchers. The motivations of the request were questioned by the original researchers and the possibility of the data being de-anonymised was considered to be high owing to the nature of the data gathered and the small size of the Swedish population. The original researchers had given specific promises of confidentiality to the children and parents taking part in the study.

when the original researchers lost the final court case they decided that their only course of action to preserve the anonymity of their subjects and the intimate details of their lives and mental health was to destroy all 15 years worth of data. This they did.

There has been conjecture that the requesting researchers had links to the Scientology movement however this has never been proved and is denied by the requesting researchers.

Apologies for not being able to summarise the finer points of the legal judgement.

Any errors in this summary are entirely accidental and due to my own ADHD behaviours!

kilt

ProcrastN8R2
10-05-07, 12:07 AM
Thanks kilt!

I was wondering if the data was destroyed for fear that the conclusions based on the data may have been flawed.

Thanks for the clarification!

meadd823
10-10-07, 05:28 AM
when the original researchers lost the final court case they decided that their only course of action to preserve the anonymity of their subjects and the intimate details of their lives and mental health was to destroy all 15 years worth of data. This they did.


If I were a part of this study and had disclosed sensitive details of my life I would have been relieved that this information was not released. Weather these people who wanted access to the studies were related to Scientology or not is irrelevant and the ultimate question in logic should be asked

Why would Professor Kärfve and Dr Elinder have to personally have access to this study?

Why couldn't Professor Kärfve and Elinder wait for the release like every body else?


The cause for refusal by Gillberg is obvious.

Professor Kärfve and Dr Elinder had already publically shown bias.

Source quote

"it wasn't long before Professor Kärfve and Dr Elinder joined forces and, when Professor Kärfve began work on a book attacking Professor Gillberg's work, the paediatrician contributed a chapter. The book, Brain Ghosts—DAMP and the Threat to Public Health, published in 2000, suggested that the purpose of the diagnosis of DAMP was "to achieve no other permanent change than segregation."4

***End Quote

These research studies have to be peer reviewed before being published. Plus seems if they really thought that Gillberg was guilty of misconduct they would have asked to have Gillberg's work reviewed by an independent group made up of his peers that have nothing to gain or loose from the findings.. The push from Kärfve and Elinder is what should be scrutinized here not Gillberg's resolve to keep confidentiality. Without confidentiality there can be no trust of health care professionals with personally sensitive information.




It is time we stop, think and ask some logical why's.