Hyperactivity in children: the Gillberg affairBMJ 2007; 335 doi: https://doi.org/10.1136/bmj.39304.486146.AD (Published 23 August 2007) Cite this as: BMJ 2007;335:370
All rapid responses
Steven Rose uphelds at least two different professional roles – one
as a basic neuroscientist and another one that is deeply involved in
political and ideological struggles in fields not directly connected with
his neuroscientific research. Unfortunately in his writings he often
doesn’t keep these roles apart but appears with the authority of the all-
knowing scientist also when struggling against the well established
diagnosis of ADHD, what he regards as the excessive use of anti-
depressants or everything that he includes under the heading of
Read for instance the chapter Explaining the brain, healing the mind?
in his book “The 21st Century Brain. Explaining, mending and Manipulating
the Mind” (2005) - and I think most people would join me in appointing
Steven Rose a pronounced advocate for the anti-psychiatry camp. He devotes
much space to the tragic cul-de-sacs of psychiatric practice like lobotomy
and barbiturates, in a condescending tone ridicules the “so-called
‘evidence-based medicine’“ and the “bible of DSM”. Talking of SRRIs he
stresses the suicide risk, the big money involved and Peter Breggin’s
ideas that many psychiatric disturbances be caused by drugs. His picture
of psychiatry is all black and sinister, without mentioning the
considerable advances made during the last half century in the quest to
alleviate the burden of mental conditions.
After having described what he calls the epidemic of depression and
anxiety and the widened criteria for bipolar disease and schizophrenia he
asks if it is “as some conspiracy theorists (such as the scientologists)
suspect, a medicalising myth through which people are kept in thrall by a
sinister psychiatric establishment?” (page 225). After finishing the book
it is difficult not to draw the conclusion that his own answer must be in
the positive. I have absolutely no suspicion that Steven Rose has direct
relations to scientology, but nevertheless many of his themes coincide
with the writings of Thomas Szasz, Peter Breggin and others in their
rather homogeneous anti-psychiatric ideology whose most aggressive
megaphone is the Church of Scientology with its DVD “Psychiatry – Industry
freelance journalist and writer, Kungälv, Sweden
Competing interests: None declared
Competing interests: No competing interests
Jonathan Gordall quotes me in his article. Allow me to clarify.
I was asked by the Swedish Research Council to review some of the
critique against Gillberg, specifically the harsh critique against
Gillberg's work formulated by Eva Kärfve in her book"Brain Ghosts"
(available only in Swedish). My judgment (see below), as well as that of
professor Ottoson, concerned what was written by Eva Kärfve and whether
her critique of the Gillberg group was unfair and could be said to
constitute scientific misconduct. We were not asked, and found no
particular reason, to look into whether she was collaborating with the
scientology church or not - in fact this is irrelevant to the primary
conflict between Kärfve and Gillberg. Neither were we asked to, or did we,
look into the events leading up to the destruction of Gillberg’s large
data material. Both of these aspects are central in Gordall’s article and
in the 22 (so far) rapid responses.
The reviews commissioned by the Swedish Research Council in 2006 have
only been available in Swedish. I think they would help the reader of BMJ
to understand the roots of the controversy and to move beyond the bitter
accusations and counter-accusations. My review and that of professor Jan
Otto Ottoson came to similar conclusions. Finally the Swedish Research
Council followed our advice that Kärfve’s criticism should not be
dismissed as scientific misconduct.
Below is my statement for the Swedish Research Council.
To the Swedish Research Council
I, the undersigned, have been requested by the Swedish Research
Council to present my views on the Lund University communication of 26
March 2005 concerning the claim that Eva Kärfve had been guilty of
scientific misconduct. A preliminary approach was made to me in the late
autumn of 2005, and this was followed by a definite request in February
2006. The Lund University communication raises a number of issues. The
Swedish Research Council, however, primarily wanted me to take a position
on the question of whether Eva Kärfve’s research could be described as
scientifically dishonest on the basis of three passages in her book
Hjärnspöken (‘Brain Ghosts’) specified in the university communication.
My opinion on these three points is as follows:
1. Kärfve (page 15) writes that Gillberg and Landgren ignored or
dismissed findings that indicated the relevance of social factors, such as
social class or housing conditions, for minimal brain dysfunction (MBD).
Is this claim misleading or untrue?
Gillberg discussed psychosocial conditions and social class in a
number of different places in his doctoral thesis. He finds, for instance
(page 103, table III), that social class, poor housing areas and rented
flat accommodation are highly correlated to the MBD diagnosis. Similarly,
the mother’s stress load is significantly correlated to the MBD diagnosis
in the child. He nevertheless concludes (page 112) that “Social
disadvantage is in itself not an etiological factor”.
This certainly looks like a dismissal.
The keywords in seeking to understand Gillberg’s conclusion are in
itself. On page 112, he explains: “Social class, although in itself highly
correlated to the MBD diagnosis, was not in any way a factor directly
affecting the background variables studied.” Instead, the etiologically
operative background factors to which weight is attached are for instance
“prenatal non-optimal factors” and “hereditary non-optimality” etc.
Gillberg appears to be arguing that since social class and housing area
are not linked to these background factors, they cannot be of etiological
interest. But if social class and housing area are highly correlated to
MBD, despite not being correlated to variables such as “prenatal non-
optimal factors”, a reasonable conclusion would instead seem to be that
social class is an (‘upstream’) etiological factor that operates via some
other mechanism than the ones discussed above. Thus an important discovery
is left hanging in the air, without any interpretation.
Alternatively, social class may nevertheless have affected the
factors grouped under the heading “prenatal non-optimal factors”
(including for instance low weight at birth and premature birth) without
such a link being detected in this particular study, targeting as it does
a relatively limited number of persons (= low statistical power). In
Sweden, low birth weight and premature birth were more common among
working-class mothers and mothers with little education during this
period. Gillberg himself notes in his thesis the relevance of low birth
weight and “small for gestational age” as etiological factors for MBD
(pages 110–111). Thus it would have been reasonable to expect that
“prenatal non-optimal factors” would mediate the observed correlation from
social class to MBD in Gillberg’s study. Here, too, an unanswered question
is left hanging in the air.
The factors grouped under the heading of “hereditary non-optimality”
also include some with a social content. Late puberty among older
relatives is taken to be suboptimal heredity. But the age of entry into
puberty has been shown to be highly differentiated by social class in all
countries where the matter has been examined. This background factor,
therefore, might equally well be interpreted as a social factor as an
Kärfve may be wrong to argue that Gillberg ignored the impact of
social class and housing area on the development of neuropsychiatric
diagnosis. She is right, however, to argue that he dismissed them as
significant causal factors. Gillberg’s reasons for dismissing them are
hardly convincing, at least not in light of our current knowledge in this
area. Even if Gillberg had devoted greater attention to this issue, it
goes almost without saying that a sociologically trained person would want
to analyse this point in greater depth and to partly dispute it. Kärfve’s
criticism in this respect cannot therefore be described as illegitimate.
2. Kärfve (pages 49–55) discusses what is termed the Mariestad study
by Magnus Landgren, Christopher Gillberg et al. The study is included in
Landgren’s thesis. Lund University’s communication asks for comments on
what Kärfve says about this study on page 52 in her book. In describing
the authors’ work, she talks about them “rummaging through old patient
records”, accuses them of cynicism and urges that their work be rejected.
Kärfve’s tone is bantering. Is she misleading, scientifically dishonest or
propagating an untruth?
Kärfve comments on the fact that five children who were screened as
positive and whose parents subsequently declined to take part in the
clinicial study were nevertheless included in it. Landgren and his
colleagues give the children neuropsychiatric diagnoses with the aid of
patient records (“a thorough evaluation of all previous records and of the
screening results” [page I:5 in Landgren’s thesis]). The diagnoses are
given without the team having met the children. Examination of the records
led to five children being given the following diagnoses: motor perception
dysfunction, mental retardation, DAMP, ADHD, and in one case a combination
This procedure contrasts sharply with the account of how other
children in the study were given their diagnoses, namely through “…in-
depth neurodevelopmental/neuropsychiatric assessment. This comprised a
detailed history, psychiatric and neurodevelopmental examination,
neuropsychological assessment and evaluation of speech and language
performed by the author (ML), psychologists and speech therapists…. a
medical, developmental and behavioural history was taken at interview with
the parents, using a standardised interview schedule…etc.” (Page I:3 in
Diagnosis setting and diagnosis criteria are one of the most
controversial aspects of the Gillberg group’s research. There is good
reason to critically discuss the way these five diagnoses were made. The
study is a limited one, at least in terms of statistical ‘power’, and it
is not clear to what extent the addition of these five diagnosed children
to the other 58 diagnosed children has affected various conclusions in the
study. The methodological problem is left unsolved. Landgren’s discussion
fails to tackle the problem; instead, the mothers’ reluctance to take part
in the study is seen as possible confirmation of the neuropsychiatric
diagnosis given to the children. Nor is there any discussion of the
ethical problem of including the five children in the study against their
I am of the opinion that Kärfve’s criticism on this point – despite
the severe language it is couched in – is neither dishonest, untrue nor
3. Point 3 in the Lund University communication principally concerns
pages 45–55 in Kärfve’s book. These sections mainly deal with how
Gillberg’s and Landgren’s theses estimate the prevalence of MBD (Gillberg)
and DAMP and other diagnoses (Landgren). Gillberg makes specific estimates
of the prevalence in Sweden based on their studies. Kärfve is highly
critical of how Gillberg’s prevalence estimate is strongly influenced by
two cases that were transferred from the control group to the group with
MBD. As a result, MBD prevalence among boys is estimated at almost 10 per
cent. This illustrates how small changes in the material can have a major
impact on estimates. Kärfve has similar objections to Landgren’s
Probably a more important problem concerning the estimation of
prevalence of such neuropsychiatric diagnoses among children in Sweden is
the extent to which the authors’ material is selected. Even if the
intention is to base the study on the population as a whole, a step by
step process occurs until those who are to take part in the study are
finally selected. The selection covers such aspects as the researchers’
choice of study venue, whether the children attend preschool, parental
decisions whether or not to take part in a survey, decisions by preschool
staff whether or not to distribute the survey questionnaires, parental
decisions as to whether their children should be clinically examined or
not, and the researchers’ decisions whether to expand groups or move
people between groups. It is by no means certain (especially in the case
of the Göteborg study) that prevalence estimates are actually based on a
sample of children that is representative of the child population in each
venue, not to mention Sweden as a whole. A full discussion of possible
bias in the estimation is needed. Nor have Landgren and Gillberg included
any statistically calculated confidence intervals with their estimates.
This is otherwise common practice, especially if working with
representative samples. Thus it is difficult to express any opinion at all
on the value of Gillberg’s estimation from 1981 that 7.1 per cent of
Swedish children have MDB.
Viewed objectively, therefore, Kärfve’s criticism of what she calls
Gillberg and Landgren’s neuropsychiatric mathematics is not particularly
Lund University has asked for an assessment of certain passages in
Eva Kärfve’s book, ‘Brain Ghosts’. Are they examples of scientific
misconduct? Kärfve does not pursue any neuropsychiatric research of her
own – in her book she makes no reference to publications of her own in
this field – and can therefore hardly be accused of scientific misconduct
in the sense of having invented her observations, falsified her findings
or showing negligence in the presentation of her data. Original research –
the base on which scientific knowledge is built – must of course be the
area of activity subjected to the closest scrutiny, whether cheating or
dishonesty is suspected or not.
In the present case, the question is whether Kärfve’s critique of
research undertaken by others is dishonest. All three points raised in the
Lund University communication concern Kärfve’s discussion of the Gillberg
group’s research, not her own studies (in the same book) concerning the
ideological roots of some of the ideas that both laypersons and
professionally trained experts possess/have possessed concerning mental
ill-health and its causes. Scientific critique should also be subject to
scrutiny, of course, but can the same criteria be applied?
Scientific critique, whether strongly polemical or not, should in my
opinion be considered a legitimate activity even when the person levelling
the criticism does not primarily belong to the research community being
criticised. Advancing one’s criticism outside academia, as part of the
public discourse, is also legitimate. Normally, scientific critique helps
improve the research in question. Research controversies, even when marred
by irrelevancies, often generate new perspectives on old truths or
unresolved scientific issues. In that sense, scientific critique is one of
the conditions of research and a prerequisite for knowledge growth.
Kärfve’s sociological expertise means that she is competent to assess
various aspects (but not all) of the Gillberg group’s research. Research
methodology and analyses of causal links are (or should be) essentially
the same in all disciplines primarily concerned with studying human beings
and human society. If they nevertheless differ, there is every reason to
express oneself with care and to carefully encourage interdisciplinary
Kärfve’s book is largely a polemical publication of a general nature
– primarily intended, perhaps, to influence the community at large and
policymakers, and only as a secondary consideration addressing the
specialised circle of people working scientifically with these matters.
One might take the view that Kärfve is unnecessarily disputatious in tone,
or sometimes goes a bit far, but writing a polemical publication on
scientific issues that is partly or largely aimed at a general readership
can hardly be equated with scientific misconduct. On the contrary, it is a
time-honoured tradition in many scientific fields.
I believe it would be of benefit to the scientific discourse if Eva
Kärfve were also to express her views precisely and scientifically in the
sociological or medical science press. An unfortunate aspect of the
conflict currently surrounding neuropsychiatry is that it risks drawing up
unproductive battle lines between social scientists and the medical
profession. Ranging the ‘biological’ against the ‘sociological’, or
‘biologism’ against ‘sociologism’, may be popular nowadays, but it is
totally fruitless. Most biological processes are affected by people’s
relations to one another, i.e. by society. Equally, social processes are
affected by biology. If we are to understand how, we need a dialogue
between disciplines. If the Swedish Research Council has a part to play in
connection with the Kärfve-Gillberg conflict, it should be to promote such
a dialogue and to prevent bloc-building and disciplinary trench warfare.
Some unique research material has been destroyed. The development of
children’s mental health in modern Swedish society is in many ways a cause
for concern. We need to bury the hatchets.
Stockholm, 20 March 2006
Professor, Member of the Royal Swedish Academy of Sciences
(Translation by Stephen Croall)
Competing interests: No competing interests
I have no axe to grind in this rather heated debate and have played
no part in it.
However, as the freelance journalist Vanna Beckman arbitrarily drags my
into the discussion by alleging, without evidence, that I 'belong to the
anti-psychiatrists' and am close to 'but fear to be connected with'
it is time to demand an apology. I do not know who Ms Beckman is, have
knowingly corresponded with her, and wish to make it categorically plain
have abolutely no time for or truck with scientology. Nor, as a bsic
neuroscientist, am I an 'anti-psychiatrist', by which I assume she means
adherent to the school of Laing and others from the 60s. What I am and
is a sceptic about the nature and scale of the current diagnoses of
deficit hyperactivity disorder amongst children, the claims that such
have a reliable base in genetically based disturbances of neurotransmitter
metabolism, and the uses of powerful medication to conrol the condition.
Competing interests: No competing interests
Professor Eriksson seems to be shooting himself in the foot here: -
On the contrary, there are, as should be obvious to the readers of
BMJ, numerous studies in the medical field with such a low drop-out rate,
or even lower.
For example, in the renowned Dunedin Study (1) 1000 individuals from New
Zealand were followed from the age of 3 to the age of 26: in this pivotal
study, that has achieved well-deserved praise, the drop-out rate is 4%,
i.e. considerably lower than in the study by Gillberg, despite that many
of the participants have moved to remote parts of the world during the
course of the study.
Citing the Dunedin study leads directly to the core of the matter.
The study is subject to full peer review, Gillberg's longitudinal study
was not: It follows articles, and articles citing, or in otherwise drawing
on the DAMP study are fatally flawed.
The discourse on this "affair" should not be slur and counter slur.
Ad hominem attacks on individuals should have no place in science, or even
discussions about scientific fact.
As some of the responders to this remarkable affair are supposed to
be scientists, simply falling back on what a good guy, and his attackers
are religious freaks, is really not good enough; and as for questioning
religious, or other, beliefs. It should beggar the belief system of
scientific fact. Take your facts where you find them, and discover whether
they are true or false, if true they will be repeatable, and or, self
The good professor goes on to state: -This is however irrelevant: to
prove that all data are correct in a study of this magnitude is obviously
impossible and can never be the task for an investigating body. - This
maybe true, but as he well knows, correct and proper peer review of the
data will lead to the truth. Further, to destroy study data on the
grounds, it would harm patients is a nonsense. Study subjects identities
are easily protected, and is done so as a basic principle.
I'm a lay person with an interest in diminishing the influence of the
pharmaceutical companies, on all areas of society, including medical
None, other than that laid out in the last paragraph
Competing interests: No competing interests
Seeing the names appearing as Gillberg supporters in this trail of
rapid responses highlights the manner in which this affair has been
suppressed. There are the usual suspects, few of whom have declared their
role in this affair. Various individuals have simply approached this
matter – not as a problem of ethics and procedure – but on the basis of
their underlying “scientific” beliefs, personal allegiances and
There are many relevant problems that could have been discussed. Who
is allowed to see data? What is the nature of confidentiality in clinical
research? What are patients permitted to consent to? Are participants in
studies permitted to consent to suppression of scientific findings or
potential scientific misrepresentation in clinical science? Should ad-
hominem argument be allowed to trump questions about science and
methodology? Why did the Gillberg group actually destroy the data? Where
are the study consent forms? Does the fact that others have (apparently)
managed to replicate some of Gillbergs findings have any relevance to the
questioning of procedure in a particular study (of course scientific
misconduct is scientific misconduct even if one obtains a result that
someone later manages to replicate)? What is the precision of patient
assessment? Might blinding in this study have been compromised to explain
some of the anomalies? All of these are relevant questions some of which
can never now be answered.
Whether the precise ADHD concept as conceived by Gillberg is
scientifically good or bad is really immaterial to the fact that debate
about this research is not permitted to take place. The BMJ have
contributed to this situation.
Mr Gornall: You state that the principles of the Gillberg affair
“have of course, been aired extensively, both in the BMJ and elsewhere”.
I challenge you to reference those discussions in any part of
the medical scientific literature (including in the BMJ). You
and the BMJ have not contributed to any debate about the actual problem –
this debate has simply not taken place.
Your list of references is awaited.
Subject of the article
Competing interests: No competing interests
Blumsohn's suggestion that he has been misrepresented is laughable. I
the link to his site in my response precisely so readers of the BMJ could,
they so wished, study his exchange with the editor of JAACAP in full.
In his Rapid Response, Blumsohn writes: "Taken in isolation, and in
context of Gornall's surrounding paragraph, most readers would be misled
into thinking that I had claimed to have somehow acquired magical powers
convince myself that the assertions of Elinder and Kärfve were proven."
Well, it must certainly have seemed that way to the editor of JAACAP,
confronted with Blumsohn's first email and the statement "This manuscript
and it's [sic] conclusions are clearly unsafe." Here was a man, the editor
have thought, who must surely know what he is talking about.
On his website, Blumsohn later held forth on the responsibilities of
editors. To avoid the risk of quoting him out of context, and because it
contains a series of entertainingly absurd propositions, I give you the
"The problem extends beyond questions of ADHD, child psychiatry,
or the JAACAP. By ignoring such problems, the integrity of all research
involving human subjects is put into jeopardy. When journal editors behave
this manner, it raises questions about the entire research enterprise in
"Such behavior [sic] on the part of a journal editor is also unfair
to the many
authors who have published respectable and legitimate science within their
pages. It means that all manuscripts published in JAACAP should be viewed
with suspicion. It is also unfair to the many psychiatrists and
who are involved in honest clinical practice, and whose profession has
brought into disrepute.
"What exactly is the function of a scientific journal beyond serving
From this little speech one may draw several inferences about
opinion of Gillberg's work, or at least the paper in question, including
believes it is neither respectable and legitimate science nor the product
honest clinical practice - awfully big conclusions for Blumsohn to reach
without the benefit of the magical powers he claims not to have.
Oh, and "It means that all manuscripts published in JAACAP should be
with suspicion"? He hasn't said, but presumably Blumsohn is writing to
journal that has ever published anything by Gillberg, demanding they
or face denunciation as "launderers" on the pages of Scientific Misconduct
Finally - and at risk of being condemned again by Blumsohn for
tendencies - I note that while Janne Larsson continues to emphasise his
support for the Swedish Freedom of Information Act, he remains less keen
freeing information about his own role in the Scientology movement.
Author of article in question
Competing interests: No competing interests
I am curious to know why Mr Gornall, a respected journalist feels the need to misrepresent what other individuals have actually said. This is done (in most cases) through insertion of small segments of quoted text within a surrounding sentence that places that text out of context. I will simply provide one minor example involving myself, though there are several others that could be provided.
Gornall states in rapid response that I campaigned (whatever that means) to:
"retract one of Professor Gillberg’s papers because of what Dr Blumsohn calls “prime facie evidence of scientific misconduct” ".
Taken in isolation, and in the context of Gornall's surrounding paragraph, most readers would be misled into thinking that I had claimed to have somehow acquired magical powers to convince myself that the assertions of Elinder and Kärfve were proven (i.e scientific misconduct). Quite clearly I could never have such evidence and neither could anyone else since the data is destroyed. Anyone reading what I had actually written would realize that the phrase "prime facie evidence of scientific misconduct" was part of a generic sentence that refers to something else altogether. It refers to the scientific misconduct that must be presumed under conditions of wilful data destruction. Indeed the data destruction itself is the misconduct. In other cases, there is no difficulty asserting this (see for example BMJ http://www.bmj.com/cgi/content/full/331/7511/281), and it is not clear what makes this affair any different. There were many alternatives to data destruction and non-transparency if the assertions of the critics were baseless.
My paragraph from which the phrase was taken reads as follows:
"Refusal of a scientist to reveal raw data would normally provide prime facie evidence of scientific misconduct. Destruction of such data while questions were being asked about the veracity of the research would constitute a very serious breach of scientific norms."
I would guess that most scientists would regard that statement as being true, although Gornall as a journalist appears to disagree. Whatever the case, it goes to the heart of the Gillberg affair.
This paragraph was part of very reasonable correspondence with a journal editor to ask how it could be possible that a scientific publication would not be retracted under such circumstances. The publication must be unsafe, even though no data misrepresentation is proven. The response of that editor was to declare effectively that the matter is no business of the journal. The editors of this same journal had provided a similar response to the BBC in relation to a drug trial where there was a large amount of evidence (from company files) that findings had been seriously misrepresented, and that the concerns of peer reviewers had been ignored. In that case the editor simply stated (on television) that :
"I don’t have any regrets about publishing [the study] at all – it generated all sorts of useful discussion which is the purpose of a scholarly journal."
That was the sole response in that case. The journal has published nothing of the concerns in either case. It is highly likely that the representation of this other study had led to serious clinical consequences in at least some real children. I have wondered previously whether any of the psychiatrists or psychologists who responded here have made any comment about that affair. After all, why defend destruction of data (citing supposed "ethical" grounds) in one case, but fail to respond "ethically" under other related circumstances.
I am rather more concerned with proper scientific procedure and the behaviour of scientific journals than the actual claims of misconduct in the Gillberg case. The hiding of raw data (from all interested parties including authors) is a key problem in medicine. If asking such questions is a "campaign" then I am proud to be part of it.
Anyone writing a serious article about this affair might have thought to have referenced other such incidents as well as the actual documents and legal reports, the lessons learned and the principles entailed. This is not an isolated incident. This Gornall would no doubt regard as writing to a "brief that better suited their agendas". The only "agenda" of scientific journalism in a scientific journal should be reasoned scientific debate - rather than the somewhat more McCarthyist "are you a scientologist - yes or no" type of journalism. Though I hesitate to do the necessary scientific Journalism, there are several examples which illustrate different aspects of the problem. Here are a few historical examples:
- A number of individuals had raised concerns about the Kinsey report (on orgasm and sexual behavior). Indiana's Sex Institute cooperated and was free in providing raw data to an investigative Committee (a committee who would have been delighted to have revealed any errors had there been any). The report and entailed issues are published (Cochran et al., "Statistical Problems of the Kinsey Report," JAMA 48 (December, 1953), pp. 673-716.)
- Dr. John Darsee threw much original data away when the whistle was blown by his associates. "The attitude of Harvard officials during the unfolding of the affair had been based on the presumption of innocence." (Science January 1982, pp. 478 482.)
- James R. Allen was involved in research which reported serious effects on animals of a herbicide produced by Dow Chemicals. Allen had not published some of his research and Dow wanted it. Allen refused, and Dow went to Court to subpoena unpublished raw data. In this case the court happened to rule that a scientist need not surrender his unpublished materials. The fact of Publication/non publication was apparently key in this case. (Science 216, 2 April 1982, pp. 34-36).
- There was an inquiry into the Sobell study of the treatment of alcoholics. In an article which appeared in Science, other scientists accused the Sobells of faking their results. The Sobells tried to block the investigation on the grounds that the confidentiality of their subjects might be compromised. (Science 218 19 November 1982 p.771.). In the end no fraud was found.
- Journals themselves (such as the BMJ) request raw data from human studies when fraud is suspected. So do a variety of other bodies. There is nothing at all special about the Gillberg study that makes it an ethical outlier exempt from the usual norms of science. At least no such reason has been provided in anything I have read. The case of Singh was well publicised in the BMJ and is of interest. That case also involved raw data, and shredding of those data by the investigator. The problem of raw data was discussed quite differently in that case, and spurious reasons for data destruction were not allowed to pass unchallenged. The report and rapid responses are well worth reading for comparison. Singh had a more creative explanation for the destroyed data ("During the course of the BMJ's inquiries, Singh has continued to suggest that he cannot help because termites had destroyed his data") http://www.bmj.com/cgi/content/full/331/7511/281 In that case the failure to provide raw data provided grounds for suspicion of scientific misconduct - not congratulations. The supposed ethical excuse was simply not raised.
But then Singh is a rather different person, and far away.
Competing interests: No competing interests
It is true that Gornall did not in email explicitly say that he was uninterested in the already existing good summaries of the Gillberg affair. He showed his disinterest by neglecting them in his article.
In email Gornall also wrote: “I did see some material you had written in English about Strattera and Gillberg...” But even if that subject really was relevant to the story, Gornall failed to take it up. The relevance for the Strattera data to his story comes from the fact that Gillberg’s uninspected DAMP research has formed the justification for drug experiments on children and adults – such as his Strattera trials. It would have led to a bit more balanced story if Gornall had taken up the Swedish Freedom of Information Act (FOIA) in a positive light and described the important safety data that can be revealed to the public with support of that law – data that pharmaceutical companies often fail to reveal.
Gillberg's colleagues (Fernell, Graham, Wilson, Eriksson) have in their submissions above nothing good to say about the principle of Freedom of Information in Sweden. As Gornall, they represent persons who use their rights per this law as suspect and the law itself as a means of spreading confidential patient information to the public.
The inclusion of the information Gornall had about Strattera, Gillberg and the FOIA would have destroyed his article. It would have told another story: How the FOIA makes it possible for patients to exert their right to informed consent, and makes it possible to know important safety data otherwise not published by pharmaceutical companies and their hired psychiatrists.
The data revealed from FOI requests about Gillberg’s trial of Strattera on adults in Sweden  tell the following:
The final report from November 2006 and earlier data show that 95 percent of the persons enrolled ended the study in advance – 75 percent due to security risks [adverse effects or no/insufficient effects]! 
The trial had been ongoing since February 2004 and was unique in that it should test the long-term effects of Strattera. Per the application to the Ethics Review Board  one should test the drug on 40 adults during 18 months, to see if “the possible positive effect remains”, and study “negative side effects short term and long term…” (p. 3). It was emphasized: “The treatment of AD/HD is in most cases ongoing for many years.” (p. 2)
Only 24 persons were enrolled (of the 40 planned for). 4 of these persons did not start. Remained 20.
The primary result: 40 percent (n=8) of the test subjects had to end the study in advance due to adverse effects from the drug.
The next result: 35 percent (n=7) ended the study in advance due to bad or no effect from the drug (“insufficient effect after a certain time”).
The other persons ending the study (n=4) did not come to their next visit or ended on own initiative for other reasons (this can and should of course also be seen as a bad effect of the drug).
And last: “One patient has completed the whole study.”
The 40 percent (n=8) taken out of the study due to adverse effects suffered from: liver injury (increased transaminase levels), thyroid gland injury (increased thyroid levels), aggression/hostility, depression, high blood pressure, subjective feelings of discomfort.
Despite the fact that the study ended 15 months ago Professor Gillberg (or Eli Lilly) has not made these results known in a press release; no interviews have been published telling about the security risks found. Only data revealed via FOIA requests have told the story.
As a final comment to the article of Elias Eriksson: It would have been becoming if Mr. Eriksson, leading the campaign to make Gillberg’s contempt of court the right thing to do, would have given some data about his financial support from the pharmaceutical industry .
 Gillberg, Long-term clinical trial of Strattera (atomoxetine hydrochloride), ref nbr: 2A02174152; B4Z-SO-LYDC, ended May 2006.
 Gillberg/Råstam/Cederlund, Slutrapport, (Final Report) November 2006. [2a] Gillberg/Råstam/Cederlund, Angående klinisk läkemedelsprövning, October 11, 2005, (Report to the MPA) [2b] Gillberg/Råstam/Cederlund, Angående klinisk läkemedelsprövning (atomoxetine hydrochloride) ref nr: 2002/74152; (Report to the MPA) April 25, 2006.
 Gillberg/Kadesjö, Ansökan till forskningsetikkommittén vid Göteborgs universitet, (Application to Ethics Review Board in Gothenburg) November 29, 2002, arrived January 14, 2003.
 Sahlgrenska, Curriculum Vitae, Elias Eriksson, accessed September 08, 2007.
Excerpt: ”Was a member of expert panels/advisory boards for several international pharmaceutical companies: Eli Lilly (USA), Ciba-Geigy (Switzerland), Pfizer (USA), SmithKline Beecham (England), Organon (The Netherlands), Lundbeck (Denmark), Glaxo SmithKline (UK), Rhone-Poulenc Rorer (France) and Schering (Germany). Scientific collaboration with Ciba-Geigy, Bristol-Myers Squibb, Novo Nordisk, Glaxo SmithKline, Merck, and Lundbeck.”…”Grants from the pharmaceutical industry: Appr 500.000 SEK / year. Grants from various foundations: Appr 300.000 SEK / year. Grants for equipment past 5 years (Lundberg foundation): Appr 5.000.000 SEK “
(Affiliated with many persons and groups critical of the medicalization and drugging of children.)
Competing interests: No competing interests
Jonathan Gornall is to be congratulated for his excellent article.
For anyone interested in this affair, not only the article itself is very
informative, but also two of the early rapid responses that have been
submitted to BMJ’s web site: the one by Mr Larsson, since it confirms the
suggestion by Gornall that the Church of Scientology plays an important
role in the campaign against Gillberg, and the one by Mr Blumsohn, since
it so clearly illustrates how Gillberg’s opponents tend to build their
campaign on disinformation.
Let’s briefly examine some of the comments made by Mr Blumsohn:
1. The accusations
Accusations of research fraud are a serious matter. One should not
accuse someone of fraud in research unless one has strong reasons to
believe that fraud has indeed taken place. And this is especially
important if one goes public with the accusations, as Eva Kärfve and Leif
Elinder indeed have done.
Blumsohn claims that Gornall is wrong when stating that the
accusations against Gillberg were vague. According to Blumsohn, the
critics “provided good grounds” for their concerns that the “supposed
results he obtained could not have arisen from the experiment as
The truth is – and this deserves to be emphasized – that there has
never been even the slightest reason to suspect forgery in the work of
Gillberg and co-workers. The accusations that triggered this debate were
not only vague, as stated by Mr Gornall, but in fact quite bizarre.
The key argument of Kärfve and Elinder when accusing Gillberg and co-
workers of fraud has always been the low drop-out rate in Gillberg’s
study. Gillberg and co-workers studied a group of children for a period of
more than 15 years and managed to keep the drop-out rate below 10%; the
fact that it was not higher is what has made Kärfve and Elinder accuse
them of fraud. However, the drop-out rate of the Gillberg study was indeed
low, but not at all extraordinarily low. On the contrary, there are, as
should be obvious to the readers of BMJ, numerous studies in the medical
field with such a low drop-out rate, or even lower.
For example, in the renowned Dunedin Study (1) 1000 individuals from
New Zealand were followed from the age of 3 to the age of 26: in this
pivotal study, that has achieved well-deserved praise, the drop-out rate
is 4%, i.e. considerably lower than in the study by Gillberg, despite that
many of the participants have moved to remote parts of the world during
the course of the study. And also in the Milwaukee study (2) – that like
the study by Gillberg and co-workers was focused on hyperactivity and
attention deficit in children – the drop-out rate was below 10% (after 13
years of follow-up). As far as I know, as yet no one has considered
accusing the researchers responsible for the Dunedin and Milwaukee studies
of fraud because of low drop-out rates, and hopefully no one ever will.
This is how Kärfve comments the issue of the drop-out rate in a major
Swedish newspaper (Dagens Nyheter) (3):
“Numerous population-based follow-up studies have been undertaken,
both in medicine and sociology, and the rule is that the participants
becomes increasingly unwilling to be examined. Drop-out rates of 30-70%
are to be expected.”
And this is what she writes on this issue in one of her formal
petitions to Goteborg University:
“I am not aware of any population-based long term study – regardless
of what has been studied – reporting a drop out rate even nearly that low”
Eva Kärfve may be unaware of the many studies reporting a lower drop-
out rate than that of Gillberg’s study. But if a drop-out rate below 10%
in longitudinal medical studies is indeed legitimate grounds for accusing
researchers of fraud, there are many groups around the world that should
be the subject of fraud investigations.
This affair illustrates the problems facing the scientific community
when fraud allegations are used to smear ideological opponents in a public
debate. Most readers of Swedish newspapers won't know what realistic drop-
out rates would be, and may be convinced by Kärfves argument that a
drop-out rate of 10% is indeed a reason to suspect fraud. It's troubling
that it is so easy to harm a researcher's reputation by spreading this
kind of disinformation.
Although the allegedly low drop-out rate has remained the key
argument of Kärfve and Elinder when attacking Gillberg, there were also
other accusations, equally bizarre.
The study of Gillberg had led to the conclusion that 7.1% of all
children may suffer from attention deficit and hyperactivity; it is –
according to an interview in another Swedish journal (5) – this
conclusion, regarded by Kärfve as “unreasonable”, that prompted her to
accuse Gillberg of having “fiddled with the figures”. In her book that
preceded the fraud allegation she states that the figure 7.1% “is not just
uncertain, it is absurd” (6).
What is probably unknown to most lay readers of the interview with
Kärfve, and/or her book, is that the figure 7.1% however is very close to
what has been reported in most other studies in this field. Skounti and co
- workers, in a recent review, presenting studies from many countries,
thus conclude that the prevalence rates range from 4 to 10% (7), and in a
recent UK study by Mill and co-workers (8) the prevalence in one studied
cohort was 6% and in another 8%. Even professor Thomas Brante, who is
usually Kärfve’s strongest supporter in her campaign against Gillberg,
writes in a recent paper: “Today it is estimated that 10% of boys and 2%
of girls has got ADHD, so the general prevalence is between 6 and 9% of
American school children. According to National Health Statistics (NHSC
2004[ref])the figure is 7.5% in 2002” (9).
Whether Brante shares Kärfve's view that Gillberg's similar findings are a legitimate
grounds for a public accusation of fraud deserves to be clarified.
One may of course question these prevalence figures on the basis that
one does not believe in the concept of hyperactivity as a medical entity
or in how problems with hyperactivity are defined. But one
cannot argue that Gillberg’s prevalence figure of 7.1% is a legitimate
reason to suspect fraud without acknowledging that numerous studies around
the world have yielded very similar results.
In the formal petitions from Kärfve to Goteborg University, there
were other accusations as well, all of them equally unconvincing. One of
her more notable reasons to accuse Gillberg and co-workers for misconduct
was the fact that one of the co-authors of some of the papers from the
Gillberg group is a child neurologist (5,10). Why would a neurologist be a
co-author on a paper on a psychiatric condition, Kärfve argues, adding
this to her short list of major reasons to suspect fraud. It is indeed
amazing that so many people in the public debate – including but
unfortunately not limited to Mr Blumsohn – have taken the allegations from
2. The fraud investigation
Given the nature of the allegations, one could argue that no
investigation was ever warranted. It is of course very important that
cases of possible research fraud be duly scrutinized, but a prerequisite
for starting an in-depth investigation must be that there is at least some
ground for concern. Spending time and resources on investigating whether a
drop-out rate being lower than 10% in this kind of study calls for
suspicion, or whether a child neurologist is allowed to co-author a paper
on ADHD, would hardly be defensible.
In line with how issues like this should be dealt with in Sweden, the
allegations were however handed over from the vice-chancellor of Göteborg
University to the dean of the medical faculty, who, in turn, handed them
over to a special committee, the ethical council, that was headed by
professor Ove Lundgren. After 8 months of investigation, this committee
reached the conclusion that no evidence of fraud had been revealed, and
advised the vice-chancellor to drop the case, without further action,
which he formally did. The Gillberg group therefore has been the subject
of a thorough and formal investigation, in agreement with the regulations,
and they are, as a result of this investigation, freed from the
Gillberg’s critics however would not take no for an answer and have
since pursued the campaign, claiming that it has never been proven that
fraud has not been committed, and argued, e.g., that Lundgren’s brief
visit to the archive – which was not part of the formal investigation –
also could not prove this. This is however irrelevant: to prove that all
data are correct in a study of this magnitude is obviously impossible and
can never be the task for an investigating body. When someone accuses a
researcher of having committed fraud, the arguments put forward should be
examined: if they do not convince the investigating body that fraud has
taken place, the accusation should be dismissed. And this is what happened
with the accusations against Gillberg.
The often-repeated claim that Gillberg has refused to have his
records inspected by external experts, now put forward also by Blumsohn,
is untrue. During the 8 months of investigation, Gillberg made it clear
that he was indeed willing to have the records inspected by the ethical
council, or by experts appointed by them, or by the Swedish Research
Council, if the ethical council believed such an action was warranted and
required it. At one time during the course of the investigation, it was
even decided that the chairman of the council should visit the archive,
and a time for this visit was decided; later, however, this meeting was
cancelled by the chairman (11). The committee finally decided an
inspection of the records was not warranted: a very reasonable decision,
given the nature of the accusations. After they had reached this
conclusion, there were obviously no reasons for the vice-chancellor or for
Gillberg to demand any further investigations.
Mr Blumsohn states that “the Gillberg group also rejected an
independent investigation offered by the Swedish Research Council”.
According to the regulations, issues like this could however be forwarded
to the Swedish Research Council by the vice-chancellors of the
universities only, and vice-chancellors were allowed to do this only if an
initial investigation within the university had provided some reasons to
suspect that fraud had been committed. Since the ethical council, led by
Ove Lundgren, had reached the conclusion that there were no reasons to
suspect fraud – meaning, e.g., that it is not forbidden for neurologists
to take an interest in ADHD, and that a drop-out rate of 10% in a study
like this is not a reason to suspect fraud – the vice-chancellor had
neither a reason nor the right to refer this issue to the Swedish Research
Council. On the other hand, if he nevertheless had decided to remit it,
Gillberg – of course – could not have “rejected” such an investigation.
The statement that Gillberg has “rejected an independent investigation
offered by the Swedish Research Council” is therefore grossly misleading.
Gillberg and co-workers have indeed refused to hand over confidential
records to Elinder and Kärfve, but they have from the start made it clear
that they were willing to have the documents inspected by external experts
in case the investigating body found that warranted. The reason that such
an inspection never took place was that the ethical council, after 8
months of investigation, came to the conclusion that the accusations did
not warrant such a measure.
Blumsohn writes: “And then the Gillberg team destroyed the data
making any scrutiny impossible.” The only reason for Gillberg’s co-workers
to destroy the documents was that this was the only way of preventing
extremely confidential information from being handed over to private
persons – Kärfve and Elinder. For anyone taking the Helsinki declaration
and the issue of informed consent in medical research seriously, this
decision was inevitable: confidential documents obviously cannot be handed
out to private persons when the participants have been promised that this
will not happen.
It is true that the records of this study can no longer be inspected,
which is equally true for many other studies conducted a long time ago.
Those wanting to address, e.g., Eva Kärfves accusation that it must be
fraud when a neurologist writes a paper on ADHD hence have no longer any
archive to demand access to. Fortunately, there has however never been any
need for an inspection in this particular case, since the major results of
Gillberg’s study have all been replicated by others, and are in no way
Also, the accusations made against these researchers from Kärfve and
Elinder fortunately are still available for inspection, and may be
examined. For anyone with insight into this field of research, reading
these documents will make it clear that there have never been any actual
reasons to suspect Gillberg and co-workers for fraud.
3. The sentences
The responses by Mr Larsson and Mr Blumsohn are illustrative of the
campaign against Gillberg in the sense than none of them provides any
scientific arguments why there should be reasons to distrust the work of
Gillberg. Indeed, Mr Larsson writes: “Bornall describes Gillberg’s views
as ‘in step with mainstream psychiatric thinking’, and that may be true.”
For any readers of the work of Kärfve, this entirely correct
statement – put forward by one of his most hostile antagonists – must come
as a surprise: the message conveyed by Kärfve to the Swedish audience has
thus been that the views of Gillberg are very much at odds with those of
the rest of the scientific world, and that this is the reason why his
study must be distrusted, and why she must inspect his records. It is
appreciated that Mr Larsson now clarifies that these accusations from
Kärfve are unfounded.
In the absence of scientific arguments, both Larsson and Blumsohn
refer to the court sentences against Gillberg in their ambition to
besmirch his name, just as Elinder has done in at least 50 letters to the
Swedish press during the past years. For the campaign against Gillberg,
these sentences have now become the main stick.
When analyzing the decisions made by different Swedish courts in this
affair, there is however only one that is of real interest, and highly
controversial, i.e. the one granting Kärfve and Elinder the right to get
access to confidential records from Gillberg’s study, in spite of the fact
that one of them (Elinder) is not a researcher (which according to the law
is a prerequisite for being granted such a right), and the other (Kärfve)
had not acted as a researcher in the sense that she had refused to ask an
ethical committee for permission to read the documents (12). Also,
according to Swedish law, the court had no right to decide that the
documents be handed out if there were any possibility that the
participants should find this discomforting. This was however highly
likely, given that the parents had provided extremely sensitive
information on their children on the basis that it would be kept secret.
For formal reasons, this highly controversial court order could not
be appealed. Whether a direction to hand these documents over to two private persons is in agreement with Swedish law has therefore not been
reassessed. Leading legal experts however have questioned this sentence,
and, to my knowledge, no single expert in law has ever defended it (13).
Why the court made this strange verdict remains unclear; but a statement from Professor Brante certifying that Kärfve needed
to see the documents in order to conduct a research project headed by
Brante probably had a significant impact. It should however be emphasized that the
reasons for the court to make this decision was not that they believed
that Gillberg had committed fraud, and that inspection of his records for
this reason was warranted. The chairman of the court has since stated that
they were not even aware of the fact that Gillberg and co-workers had been
accused of misconduct.
The subsequent court decisions, where both the vice-chancellor of
Göteborg university and members of the Gillberg group have been sentenced
for not having obeyed the first, arguably incorrect, sentence, are less
important: they are unfortunate but somehow logical consequences of the
first sentence. From a legal point of view, you have to obey a court
order, even when it happens to be at odds with the law. Gillberg and co-
workers however felt that this particular court order could not be obeyed,
since that would have been to break the promise made to the participants,
and to violate basic ethical rules for medical research, and for this
standpoint they was later sentenced. Hopefully most researchers would have
acted as Gillberg and co-workers did, if put in the same situation.
Finally: Let’s hope that additional members of the anti-Gillberg-
league – scientologists as well as non-scientologists – will take this
opportunity to expose themselves and their arguments for public scrutiny.
This would hopefully be the most effective way to put an end to this
Competing interests: None declared
1) Moffitt TE, Harrington H, Caspi A, Kim-Cohen J, Goldberg D,
Gregory AM, Poulton R: Depression and generalized anxiety disorder:
cumulative and sequential comorbidity in a birth cohort followed
prospectively to age 32 years. Arch Gen Psychiatry 2007;64:651-60
2) Fischer M, Barkley RA, Smallish L,Fletcher K: Young Adult Follow-
Up of Hyperactive Children: Self-Reported Psychiatric Disorders,
and the Role of Childhood Conduct Problems and Teen CD. Journal of
Abnormal Child Psychology 2002; 30: 463–475
3) Dagens Nyheter, 25/1 2003
4) Petition from Eva Kärfve to the ethical board, Dec 9, 2002
5) SIF-tidningen 6/2 2003
6) Kärfve E: Hjärnspöken: DAMP och hotet mot folkhälsan. Symposion
7) Skounti M, Philalithis A, Galanakis E: Variations in prevalence of
attention deficit hyperactivity disorder worldwide. Eur J Pediatr 2007:
8) Mill J, Caspi A, Williams BS, Craig I, Taylor A, Polo-Tomas M,
Berridge CW, Poulton R, Moffit T: Prediction of heterogeneity in
intelligence and adult prognosis by genetic polymorphisms in the dopamine
system among children with attention-deficit/hyperactivity disorder:
evidence from 2 birth cohorts. Arch Gen Psychiatry. 2006; 63:462-469
9) Brante T: Den nya psykiatrin: exemplet ADHD. In: "Diagnosens
Makt", ed: G Hallerstedt, Daidalos (Göteborg), 2006, pp 73-111
10) Petition from Eva Kärfve to the ethical board, June 25, 2002
11) Personal communications from Ove Lundgren, chairman of the
ethical council, and from members of the Gillberg group. For details, see
also a petition to the Chancellor of Justice:
http://www.childnps.se/dokument/tilljkgoranlambertz.pdf. This will shortly
be available also in English on this web site.
12) Correspondence between the Swedish research Council and professor
Thomas Brante; for details: see petition to the Chancellor of Justice:
13) Professor Elisabeth Rynning, Dagens Nyheter, 14/5 2005; see also
Vanna Beckman: Strider under Hjärnåldern, Pavus Utbildning (2007); see
also petition to the Chancellor of Justice:
Elias Eriksson and Kristoffer Hellstrand have submitted a petition on this issue to the Chancellor of Justice.
Competing interests: No competing interests
I congratulate Jonathan Gornall on his well balanced article.
The key issue which has passed unremarked in the responses by Janne
Larsson, Aubrey Blumsholm and Leif Elinder is that only in Sweden could
Christopher Gillberg and his colleagues have been found guilty of the
"offence" of protecting confidentiality. The Swedish Freedom of
Information Act essentially allows anyone, with any interest, access to
all material collected with public funds - even if that interest is
malign. The order of the court to release documents containing highly
sensitive information to two individuals with no relevant expertise or
qualifications seemed extraordinary to me as a UK citizen. It was not
until I read the judgement concerning the Helsinki Declaration made by the
Swedish Court of Appeal that the case made any sense: "The international
declaration to which the World Health Organisation agreed is not of such a
nature that it has priority over Swedish law. What Christopher Gillberg
has objected to on the grounds of the content of this declaration
therefore lacks significance in the case”.
The World Health Organisation’s Helsinki Declaration makes it clear that
no country's laws or regulations can be used as a pretext for failing to
follow the ethical principles in the declaration.
I have collaborated with Professor Gillberg in a number of projects in Glasgow.
Competing interests: No competing interests