<P id=slugline>BMJ 2007;335:370-373 (25 August), doi:10.1136/bmj.39304.486146.AD
<H2 class=sertitle>Research ethics</H2>
Hyperactivity in children: the Gillberg affair
<STRONG>Jonathan Gornall</STRONG>, <EM>freelance journalist</EM></STRONG></SUP>
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<P id=article_remark>What drove members of a highly respected psychiatric research<SUP>
group to defy the Swedish courts and destroy 15 years' worth
of irreplaceable data? A decade after the Gillberg affair began, Jonathan Gornall
examines the facts
Over one weekend in May 2004, three researchers in the University
of Gothenburg's department of child and adolescent psychiatry
shredded tens of thousands of documents, destroying all data
from a 15 year longitudinal study following 60 Swedish children
with severe attention deficit disorders.
What became known as the Gillberg affair began in 1996, at a
community summer party on the Swedish island of Resö. Among
the guests were Leif Elinder, a paediatrician recently returned
to Sweden after several years spent working abroad, and Christopher
Gillberg, professor of child and adolescent psychiatry at Gothenburg
The men had known each other since childhood, when they had
met on the island most summers. Professor Gillberg had since
become a world expert in autism and attention deficit disorder
and a leading proponent of deficits in attention, motor control,
and perception (DAMP), a Nordic concept developed in the 1970s
to describe a combination of hyperactivity, lack of attention,
and clumsiness and later regarded as a subcategory of attention
deficit hyperactivity disorder.
What was said at that party depends on whom you ask, but both
men agree they spoke briefly about Professor Gillberg's work,
that Dr Elinder wanted to meet to discuss the work further,
and that he was rebuffed. Dr Elinder says Professor Gillberg
wasn't interested; Professor Gillberg says he simply didn't
have the time.
While working as a paediatrician in Hamilton, New Zealand, Dr
Elinder had developed doubts about the diagnosis and treatment
of children with behavioural problems and he hoped to discuss
this with Professor Gillberg. "We saw many wayward kids," he
said, "and I felt that people expected me to label them, to
give them a diagnosis, and treat them with Ritalin or amphetamines."
At first, he said, "I just followed the trend, but I became
The following March, Dr Elinder read a newspaper article cowritten
by Professor Gillberg, which declared that 120 000 Swedish children
(10%) had some kind of neuropsychiatric problem, including but
not limited to attention deficit disorders and Asperger's and
"We are talking about a real waste of
human resources," Professor Gillberg wrote, appealing for more
awareness among teachers of these children and their problems.
"Most things in life you can as an adult compensate for, but
a ruined self-esteem and a feeling of being useless can never
be repaired completely."
Professor Gillberg's estimate of the size of the problem was
in step with mainstream psychiatric thinking. America's surgeon-general
stated in 2001 that in the US "1 in 10 children and adolescents
suffer from mental illness severe enough to cause some level
Dr Elinder, however, thought Professor Gillberg's
view was "absolutely wrong. Of course there is such a thing
as wayward children, but you cannot diagnose an inborn, neuropsychiatric
In an article published shortly afterwards in the Swedish Medical Journal
, Dr Elinder questioned Professor Gillberg's 10% figure.
In his view, "cultural handicaps" were being wrongly classed
as medical conditions.3
Professor Gillberg's article also caught the attention of Eva
Kärfve, an associate professor of sociology at Lund University.
She had become more aware of attention deficit disorders, she
says, when she introduced the last two of her five children
to kindergarten. "I found that those working in pre-schools
were suddenly talking in medical terms. Ten years earlier I
had never heard this. Now they were saying, Has that
child a defect, a dysfunction?' They were not talking about
family life, a child's emotional environment, like they used
to do. I felt I had to look into this."
Her concern, she says, was that such diagnoses had "a flavour
of degeneration theorythat there are people who are right
and people who are not. I felt it was a political movement pretending
to be scientific."
Degrees of difference
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 GhostsDAMP 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
The claim outraged Professor Gillberg's camp, which accused
Professor Kärfve of lies and misrepresentation and protested
to Lund University that her book was "the opposite of what was
Professor Gillberg's supporters also suspected that the documents
that had formed the basis of Professor Kärfve's book had
been supplied to her by a writer linked to the <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> movement,
which has a long standing opposition to psychiatry.5 6
The documents arose from a conference on attention deficit hyperactivity
disorder that Professor Gillberg had attended in the autumn
of 1999. Shortly afterwards, Janne Larsson, a journalist who
writes for the Swedish chapter of the Church of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>'s
Citizens Commission on Human Rights,7
applied to the National
Board of Health and Welfare for access to the conference material.
The delegates objected, maintaining the materials were working
documents and not yet public property and the board rejected
the application. However, a spokesperson for the board confirmed
that Mr Larsson had won a court order granting him access.
Professor Kärfve originally told me that the documents
from the conference had been posted to her anonymously by what
she assumed to be a disillusioned insider at the board. Later,
however, in an email dated 5 July 2007 she conceded: "Larsson
did send me the same material, but somewhat later." She had,
she insisted, "never used anything sent to me by him." Mr Larsson
declined three invitations to comment.
Two months after the publication of Professor Kärfve's
book, the Journal of the American Academy of Child and Adolescent Psychiatry
published a follow-up of the participants in the
Gothenburg study at the age of 22.8
The paper reported that
58% of 55 participants with attention deficit disorder, none
of whom had received stimulant treatment, had developed personality
disorders, committed serious crimes, or misused drugs or alcohol.
This compared with 13% in the control group.
Professor Gillberg discussed the findings at the annual meeting
of the Royal College of Psychiatrists in London in July 2001.
"I was shocked," he told the conference. "These children are
so much worse off in terms of education and employment than
the general population. We must learn that all these children
and adults are individuals and changes in attitude are more
important than treatment."
The sentiment was at odds with the by now popular media view
of Professor Gillberg as someone who would like to give drug
treatment to all Sweden's children. Although he shares the common
professional view that it is "beyond doubt that central stimulants
ameliorate basic symptoms" of attention deficit disorder, Professor
Gillberg is also on record as stating that drugs should not
be used "unless other avenues of intervention have been entered
Accusations of misconduct
Professional debate over the possible overdiagnosis of conditions
such as attention deficit disorder and overuse of stimulants
in their treatment is nothing new.10 11
But in 2002 Professor
Kärfve and Dr Elinder took the debate to another level,
accusing Professor Gillberg and colleagues of research fraud
and launching a series of applications to gain access to the
raw data behind the Gothenburg study.
After the experience with data from the 1999 conference, Professor
Gillberg's group was adamant they would not release them. As
two of Professor Gillberg's Gothenburg colleagues, Elias Eriksson
and Kristoffer Hellstrand, were to put it later in an appeal
to the Chancellor of Justice, "The important thing is not how
Kärfve and Elinder would have handled the information,
but that Gillberg could not guarantee to the participants that
the information would be handled correctly . . . much of the
information they chose to propound in the media has been highly
misleading or untrue."
They added: "One can attack a researcher for carrying out poor
research. But when one accuses someone of deliberate dishonesty
one has exceeded a clear boundary."
Professor Kärfve led the charge, writing to Professor Gillberg
and colleagues in February 2002 to request access to the individual
records behind all five phases of the group's longitudinal study.
She was refused, on the ground that the material was confidential,
and she took the case to the Administrative Court of Appeal.
On 13 April Dr Elinder wrote to Bo Samuelson, then vice chancellor
of Gothenburg University, demanding an investigation to determine
"whether good ethical standards of research" had been adhered
to. "How can the scientific community be persuaded that the
children who were examined in 1978 were identical to the young
adults who were examined in 1993?"
Dr Elinder's request was rejected by the university's ethics
council, but three weeks later, Professor Kärfve demanded
an inquiry, claiming: "The disposition and design of these studies
entertain certain misgivings" giving rise to questions of "manufacturing
and forgery of data and sources."
Like Dr Elinder, Professor Kärfve seemed to have no evidence
of forgery, but only suspicions. These included surprise at
the low drop-out rate, a subjective disagreement with "The treatment
of the finding of depression' as a variable in the judgment
of poor outcome," and cynicism about whether the psychiatrists
who had made follow-up diagnoses throughout the study had been
truly blind to the participants' original diagnosis. As the
university's ethics council commented in a response on 24 February
the following year, "Several of Kärfve's critical comments
about the article have nothing to do with scientific misconduct,
but rather deal with interdisciplinary differences of views
. . . which Kärfve regards as fraud." The researchers had
"put in a lot of effort to make the drop-out rate as low as
possible" and the council concluded that Kärfve's petition
"does not prove that Rasmussen-Gillberg's research is not following
good scientific conduct."
An underlying motive?
The attacks continued, with Dr Elinder demanding access to the
material on 9 July. Shortly after this shadow of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>
crossed the story again.
Professor Gillberg's group has always claimed that in the autumn
of 2002, at the height of the battle to gain access to their
data, Professor Kärfve attended an anti-psychiatry <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>
conference in Germany. She admits attending the meeting, but
has maintained that she did so only as an observer and in her
role as a sociologist. <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>, she said, was a "scary"
movement about which she had written critically.
However, a circular for the conference, "International hearing
on psychiatry labeling and drugging children," listed Professor
Kärfve as a participant, alongside seven other speakers,
including the presidents of the American and Italian branches
of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>'s Citizens Commission on Human Rights. Furthermore,
Nicola Cramer, a spokesperson for the German branch, told me
that although to her knowledge Professor Kärfve did not
belong to the <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> church, she had been "one of many
guest speakers who took part in this hearing. She spoke about
the Swedish psychiatric disorder DAMP."
Professor Kärfve responded in an email that she "did not
lecture or associate' at that meeting." She said that
she did talk to Nicola Cramer, but did not talk publicly, apart
from giving a few replies at what she later discovered to be
"a strange kind of press conference."
She could not recall how she had learnt about the meeting but
was adamant that she had given no lecture there and, in any
event, "I never felt it could have done me any harm to talk
to people . . . there is always someone you can reach."
Professor Kärfve was not the only sociologist at the conference.
She was accompanied by Thomas Brante, the head of her research
department at the University of Lund, who has publicly backed
Professor Kärfve's actions in the Gillberg affair. Professor
Kärfve wrote in the same email that he could confirm that
she was there to investigate <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> and not to lecture.
Whatever the truth or wisdom of Professor Kärfve's association
with <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>, the church has eagerly exploited the Gillberg
debate and Professor Kärfve's role in it. In an online
article in 2005, the Swedish branch of the commission boasted
of having conducted a lengthy campaign against Professor Gillberg,12
while online the international commission quotes Professor Kärfve
as saying: "The claim that ADHD is biologically caused or stems
from a metabolic disturbance in the brain is not scientifically
founded in any way."13
An account of the Gillberg affair also features in the current
issue of Freedom
, a magazine published by the Church of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>
The article seems to be a collection of extracts
from previously published sources, none of which is attributed.
One quote, from Professor Brante, was taken from a rapid response
he submitted in 2004 to a BMJ
article about the destruction
of Professor Gillberg's data: "The most rational . . . course
of action would be to withdraw all research relying on the [Gillberg]
Another passage from Brante's BMJ
response did not appear in
article. "Claims have been made that Professor Kärfve
is a scientologist, that she runs a personal campaign, vilifying
Professor Gillberg," wrote Brante. "These are mistaken . . .
<STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG> is a church and Kärfve has no links whatsoever
to it." There was, however, no mention of the trip he and Professor
Kärfve had made to Munich.
The year 2003 saw a series of court actions, orders, and appeals
as Professor Kärfve and Dr Elinder fought to get their
hands on the material, and Professor Gillberg and colleagues
resisted. The study participants and their parents had opposed
the release of the material, said the group, and the volume
and nature of the data made anonymising impossible.
Professor Gillberg had personally guaranteed confidentiality
to all the participants. One of the documents he had signed,
on the instruction of the university's ethics committee, assured
them that "you will never be registered in public data records
of any kind and the data will be treated so that nobody apart
from those of us that meet you and have direct contact with
you will be able to find out anything at all about you."
Furthermore, Professor Gillberg asserts that his refusal to
part with the material was in accordance with the World Medical
Association's ethical principles for research, as stated in
the Declaration of Helsinki.16
His stance divided Swedish academe. More than 300 scientists,
including Arvid Carlsson, Sweden's most recent Nobel Prize winner,
signed a petition supporting him; others opposed him. Professor
Gillberg was even criticised for having given assurances of
confidentiality in the first placea criticism made in
the pages of his university's magazine by Björn Thomasson
of the Swedish Research Council: "The problem is that Professor
Gillberg has given assurances that he evidently had no right
to give. One cannot promise that the material will not be scrutinised
by someone outside the research group. He has simply gone too
Gunnar Svedberg, vice chancellor of Gothenburg University, summed
up the ethical dilemma facing Professor Gillberg and colleagues
in a letter to Professor Kärfve and Dr Elinder in September
2003: "Professor Gillberg refers [to] the reasons for his refusal,
among them customary ethical standards and statutory requirements
that apply to medicine and to research. A large number of researchers
at different universities in Sweden have written to me to state
that ethical reasons prevent the release of the material concerned
to outsiders without the consent of the participants."
The legal system, however, paid no heed to Professor Gillberg's
dilemma. Twice in 2003 the Supreme Administrative Court rejected
his applications to appeal the decisions allowing Professor
Kärfve and Dr Elinder access to the data on the ground
that "he lacked any interest in the case that could be acknowledged
in law as entitling him to apply for a rehearing of the issue."18
The final act began on 4 May 2004, when the court overturned
a last attempt by the university to demonstrate that Professor
Kärfve and Dr Elinder were not acting as proper researchers
and, therefore, were not entitled to examine the documents.
On 6 May the university informed Professor Gillberg's department
that it must make the data available. In an email reply the
same day, Professor Gillberg, working in England, declared he
would not cooperate. Three days later, Professor Gillberg's
three colleagues informed the university's vice chancellor that
they had destroyed all the data.
On 27 June 2005, just over a year after the material was shredded,
Professors Gillberg and Svedberg were convicted of misuse of
office. Professor Gillberg was given a conditional sentence
and both men were fined and ordered to pay costs.19
Gillberg's application to appeal was rejected.
On 26 January 2006, Professors Eriksson and Hellstrand, two
of Professor Gillberg's colleagues at Gothenburg who had not
been part of his research group, wrote to Sweden's Chancellor
of Justice to seek a judicial review. The legal process, they
said, had been "exploited in the most wide-ranging slander campaign
heard in current Swedish debate. That has meant that the public
have been led to believe that Professor Gillberg and co-workers
have committed research fraud . . . The manner in which public
officials contributed to the success of this campaign deserves
analysis." The application is under consideration.
Two months later, psychiatrists Peter Rasmussen and Carina Gillberg
(Professor Gillberg's wife and one of the main researchers in
the group) and unit administrator Kerstin Lamberg were convicted
of destroying government documents and fined.
None of the main protagonists in the affair has escaped unscathed.
In 2003, two of Professor Gillberg's colleagues accused Professor
Kärfve of "scientific dishonesty" in her book and demanded
an investigation by her university. They also suggested she
might be linked to the Church of <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>. Initially, Lund
University rejected the complaint. Dr Rasmussen, one of the
three who had destroyed the research data, then appealed to
the National Agency for Higher Education, which agreed that
the university should have examined the allegations in greater
In March 2005, Lund invited the Swedish Research Council to
evaluate the material, but the investigation stalled. "It took
almost a year to find two experts who were . . . willing to
take on the task," says Björn Thomasson, the council officer
who had criticised Professor Gillberg and who headed up the
investigation into Kärfve. "It was a very hot potato."
Two experts were finally foundDenny Vågerö,
a professor of medical sociology and director of the Centre
for Health Equity Studies at Stockholm University, and Jan-Otto
Ottosson, a professor of psychiatry at Gothenburgand
by March 2006 they had made their report.
Although Professor Ottosson felt that some of Professor Kärfve's
criticisms were unjustified and "sometimes based on misunderstanding,"
and that the tone of Brain Ghosts
was "confrontational" and
"insinuating," both men agreed that the book was polemical criticism
rather than research and that, therefore, Professor Kärfve
could not be guilty of breaching good research practice.
The report added that the council's review team had, therefore,
taken no position on whether there was any basis for Professor
Kärfve's criticisms. Furthermore, it had not concerned
itself with the allegation that she was allied to <STRONG><FONT style="BACKGROUND: #ffffff; COLOR: #cc0000" color=#cc0000>Scientology</FONT></STRONG>.
Although exonerated, Professor Kärfve, who continues to
teach at Lund, believes the accusations against her put an end
to funding by the Swedish Research Council. "They will always
deny it, but I realise I will never get grants any more," she
The council declined to comment, but confirmed that grant applications
from Professor Kärfve had been rejected in 2001, 2002,
2005, and 2006.
She would not, however, hesitate to do the same again: "I am
totally convinced I was right. The campaign against me made
me more convinced that this was worth looking into . . . If
they were conducting this research in a proper manner, they
wouldn't have treated me like they did."
Although Dr Elinder continues to work for the Resource and Knowledge
Centre of the Social Services in the city of Uppsala, he has
parted company with the Försäkringskassan, the Swedish
social insurance agency, for which he had worked as a medical
adviser. The same views that led him to attack Professor Gillberg
isolated him within the agency.
"I was sceptical about giving people permanent sick leave for
vague diseases," he said. In Sweden, half a million people of
working age were receiving benefit while not working, and "many
of them don't have any specific symptoms apart from their own
Robin Lapidus, a spokesperson for the agency, confirmed that
Dr Elinder and the organisation had terminated his employment
by mutual agreement in February 2006. They had had "opposing
views about assessing the right to sickness benefits. Among
other things he had difficulty with relating incapacity to work
to so-called symptom diagnoses.' Doctors specialising
in social insurance counsel the social insurance agency on medical
matters. They do not make decisions."
Professor Gillberg's work continues. Research funds have continued
to flow his way, and in November the Swedish Research Council
awarded him a record sum for three years of study into autism.
The affair has, however, left deep scars. Professor Gillberg
has lodged a grievance against the Swedish state with the European
Court of Human Rights. The court cannot overturn Professor Gillberg's
conviction, but it can rule that the state's actions were wrong.
Professor Gillberg's five page submission to the Court of Human
Rights sums up the dilemma in which he and colleagues found
themselves and the sense of injustice he still feels:
"In my view," wrote Professor Gillberg, "it is unreasonable
that I am first obliged to give strict promises of confidentiality
by the State in order to conduct medical research, then . .
. I am ordered by the State to break hundreds of promises of
confidentiality . . . then I am indicted by the State and, ultimately,
am sentenced as a criminal by the State because I had not broken
those promises of confidentiality that I had the State's instruction
"Something is clearly wrong in this chain of events, but it
is difficult to see how the error can be mine."
<HR align=left width="30%" noShade SIZE=1>
<A name=""><!-- null --></A>Competing interests: None declared.<SUP>
<A name=""><!-- null --></A>Provenance and peer review: Commissioned, peer reviewed.
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</LI>[/list]<A name=relation_type_72><!-- null --></A>
<DT><STRONG>Extremely low birth weight is linked to risk of chronic illness</STRONG>
BMJ 2005 331: 180. <NOBR>[Extract] [Full Text]
<DT><STRONG>Use of stimulants for attention deficit hyperactivity disorder: FOR</STRONG>
BMJ 2004 329: 907-908. <NOBR>[Extract] [Full Text]
<DT><STRONG>Destruction of data prompts calls for Swedish agency to investigate research misconduct</STRONG>
BMJ 2004 329: 72. <NOBR>[Extract] [Full Text]
<DT><STRONG>Evidence and belief in ADHD</STRONG>
<DD>Morris Zwi, Paul Ramchandani, and Carol Joughin
BMJ 2000 321: 975-976. <NOBR>[Extract] [Full Text]
</DD></DL></FONT><A name=responses><!-- eletters --></A>
Read all Rapid Responses
<DT><STRONG>An extraordinary scientist and clinician</STRONG>
bmj.com, 25 Aug 2007 [Full text]
<DT><STRONG>Research ethics and ADHD</STRONG>
bmj.com, 29 Aug 2007 [Full text]
<DT><STRONG>Rewriting history � the Gillberg affair</STRONG>
bmj.com, 31 Aug 2007 [Full text]
bmj.com, 1 Sep 2007 [Full text]
<DT><STRONG>Larsson: Scientologist - yes or no?</STRONG>
bmj.com, 2 Sep 2007 [Full text]
<DT><STRONG>Profound ethical issues smoothed over</STRONG>
bmj.com, 2 Sep 2007 [Full text]
<DT><STRONG>A well-researched article by J Gornall</STRONG>
bmj.com, 2 Sep 2007 [Full text]
<DT><STRONG>The Freedom of Information Act is a cornerstone in our democracy</STRONG>
bmj.com, 3 Sep 2007 [Full text]
<DT><STRONG>Jonathan Gornall misses critical ethical research questions</STRONG>
<DD>Leif R Elinder
bmj.com, 3 Sep 2007 [Full text]
<DT><STRONG>Gillberg: A further defence</STRONG>
<DD>Philip J. Graham
bmj.com, 4 Sep 2007 [Full text]
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