Lars Christopher Gillberg (born 19 April 1950), who has sometimes published as ''Gillberg and Gillberg'' with his wife Carina Gillberg, is a professor of child and adolescent
psychiatry
Psychiatry is the medical specialty devoted to the diagnosis, prevention, and treatment of mental disorders. These include various maladaptations related to mood, behaviour, cognition, and perceptions. See glossary of psychiatry.
Initial psych ...
at
Gothenburg University
The University of Gothenburg ( sv, Göteborgs universitet) is a university in Sweden's second largest city, Gothenburg. Founded in 1891, the university is the third-oldest of the current Swedish universities and with 37,000 students and 6000 s ...
in
Gothenburg
Gothenburg (; abbreviated Gbg; sv, Göteborg ) is the second-largest city in Sweden, fifth-largest in the Nordic countries, and capital of the Västra Götaland County. It is situated by the Kattegat, on the west coast of Sweden, and has ...
,
Sweden
Sweden, formally the Kingdom of Sweden,The United Nations Group of Experts on Geographical Names states that the country's formal name is the Kingdom of SwedenUNGEGN World Geographical Names, Sweden./ref> is a Nordic country located on ...
, and an honorary professor at the
Institute of Child Health (ICH),
University College London
, mottoeng = Let all come who by merit deserve the most reward
, established =
, type = Public research university
, endowment = £143 million (2020)
, budget = ...
. He has also been a visiting professor at the universities of
Bergen
Bergen (), historically Bjørgvin, is a city and municipality in Vestland county on the west coast of Norway. , its population is roughly 285,900. Bergen is the second-largest city in Norway. The municipality covers and is on the peninsula of ...
,
New York,
Odense
Odense ( , , ) is the third largest city in Denmark (behind Copenhagen and Aarhus) and the largest city on the island of Funen. As of 1 January 2022, the city proper had a population of 180,863 while Odense Municipality had a population of 20 ...
,
St George's (University of London),
San Francisco
San Francisco (; Spanish language, Spanish for "Francis of Assisi, Saint Francis"), officially the City and County of San Francisco, is the commercial, financial, and cultural center of Northern California. The city proper is the List of Ca ...
, and Glasgow and
Strathclyde
Strathclyde ( in Gaelic, meaning "strath (valley) of the River Clyde") was one of nine former local government regions of Scotland created in 1975 by the Local Government (Scotland) Act 1973 and abolished in 1996 by the Local Government et ...
.
Christopher Gillberg's extensive research (more than 500 publications indexed on the PubMed data base), has significantly contributed to the field of child and adolescent neuropsychiatry/developmental medicine in areas such as autism spectrum disorders, ADHD, epilepsy, intellectual disability, oppositional defiant disorder/conduct disorder, Tourette syndrome and anorexia nervosa. He is the most productive researcher of autism in the world. His research ranges from basic neuroscience, genetics and epidemiology, through to clinical presentations and prognosis, intervention and treatment. He is the founding editor of the journal ''European Child & Adolescent Psychiatry'', and is the author and editor of many scientific and educational books and has written at least 30 books in these fields, which have been published in a wide variety of languages.
The media company Thomson Reuters have listed the researchers most frequently cited in a range of scientific journals deemed the world's most prestigious. Christopher Gillberg is among 15 Swedish researchers within the field of medicine featured in the list.
Awards
Professor Gillberg has received several awards for his research, including the Fernström prize in 1991, the Ingvar Award in 1995, The Ronald McDonald Major Award for Paediatrics in 1998, Ågrenska Major Medicine Prize in 2001, Philips Nordic Prize in 2004 – in the prize justification he was acknowledged for his commitment to the rights of patient privacy and confidentiality. In 2009,
Carl XVI Gustav of Sweden
Carl XVI Gustaf (Carl Gustaf Folke Hubertus; born 30 April 1946) is King of Sweden. He ascended the throne on the death of his grandfather, Gustaf VI Adolf, on 15 September 1973.
He is the youngest child and only son of Prince Gustaf Adolf, D ...
presented Gillberg with
The King's Medal of the Seraphim order for his contributions in the field of child and adolescent psychiatry. He received the Dahlberg award for his genetic research, and the Life Watch Award for Autism Research in 2010. In 2012 he was awarded one of Sweden's most prestigious scientific honours: the Söderberg Prize for Medicine ("Little Nobel Prize"). The prize is financed by Torsten Söderberg's Foundation and Ragnar Söderberg's Foundation and was handed out at a ceremony held at The Swedish Society of Medicine in Stockholm. In the prize justification it was emphasized that Christopher Gillberg "in a wise way combines specific research results with a versatile view of the human being and the patient as a bio-psychosocial whole". His commitment to the supervision of young researchers was also highlighted.
On 12 May Professor Christopher Gillberg was presented with the prestigious 2016 INSAR Lifetime Achievement Award at the International Meeting for Autism Research (IMFAR), held in Baltimore, Maryland, USA. INSAR (The
International Society for Autism Research), that nominates the laureate, is a scientific and professional organization devoted to advancing knowledge about autism spectrum disorders. INSAR Lifetime Achievement Award acknowledges an individual who has made significant fundamental contributions to research on autism spectrum disorders that have had a lasting impact on the field.
In 2010, the '
Gillberg Neuropsychiatry Centre'' (GNC), within the Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, was founded. The centre was officially inaugurated by HM Queen Silvia in May 2011. The GNC works actively to recruit young scientists in the research fields of autism, ADHD, Oppositional Defiant Disorder/ Conduct Disorder (ODD/CD), anorexia nervosa, intellectual developmental disorder, language disorder, dyslexia, epilepsy, cerebral paresis and other ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations).
In January 2013 around 58 researchers were linked to the GNC. The staff at GNC and collaborators in other countries, work in child and adolescent psychiatry, child neurology, molecular genetics, community medicine, primary care, epidemiology, statistics, and twin methodology. External collaborators include University College London, Glasgow University, University of Edinburgh, University of Bergen, Karolinska Institute, Kōchi University, Kochi Prefecture, Young Epilepsy, and INSERM and the Pasteur Institute.
The GNC also works to ensure the dissemination of research, not only using scientific and popular science publications, but by continuous updating of the website (www.gnc.gu.se) and through the organization of international conferences.
Controversy
Gillberg is also known for his role in a controversy relating to the confidentiality of medical records.
The controversy involved public access under the Swedish
Principle of Public Access (''offentlighetsprincipen'') to medical records and other personal data about a group of children participating in an early longitudinal study on
ADHD
Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by excessive amounts of inattention, hyperactivity, and impulsivity that are pervasive, impairing in multiple contexts, and otherwise age-inapp ...
/DAMP, commenced in 1977 at Gothenburg University.
[Gornall, Jonathan (2007]
"Hyperactivity in children: the Gillberg affair"
''BMJ'', 335 (7616): 370–373, 2007) Two critics of DAMP and ADHD diagnoses, who had previously filed complaints that questioned the integrity of the study, invoked the Swedish
Freedom of Information Act Freedom of Information Act may refer to the following legislations in different jurisdictions which mandate the national government to disclose certain data to the general public upon request:
* Freedom of Information Act 1982, the Australian act
* ...
in order to gain access to the raw data of the study after their fraud allegations had been investigated and officially dismissed by the regional
ethics committee
An ethics committee is a body responsible for ensuring that medical experimentation and human subject research are carried out in an ethical manner in accordance with national and international law.
Specific regions
An ethics committee in the E ...
. Gillberg and two
chief physicians involved in the study stated that
medical ethics principles prevented them from turning over sensitive personal and medical data as the participants' parents had been promised
confidentiality
Confidentiality involves a set of rules or a promise usually executed through confidentiality agreements that limits the access or places restrictions on certain types of information.
Legal confidentiality
By law, lawyers are often required ...
in writing before giving
informed consent
Informed consent is a principle in medical ethics and medical law, that a patient must have sufficient information and understanding before making decisions about their medical care. Pertinent information may include risks and benefits of treatme ...
on behalf of their children. However, the court ruled that all files related to the study were to be released under the Principle of Public Access. Rather than breaking their promises of confidentiality to the participants, the two chief physicians, along with a university administrator, shredded the sensitive files of the study.
[Björkman, Barbro and Sven Ove Hansson (2006).]
Bioethics in Sweden
. ''Cambridge Quarterly of Healthcare Ethics''. New York: Summer 2006. Vol. 15, Issue 3; pp. 285–293. The following year, Gillberg, as head of the university's
Neuropsychiatric Department, and the University Vice-Chancellor were convicted and fined for "breach of duty" in their capacity as public officials at a government institution that had failed to release the documents in accordance with the court order.
["Prosecution of employees of Gothenburg University for breach of duty arising from failure to comply with judgments of the Administrative Court of Appeal concerning the release of documents etc. (Reg. no. 1568-2003 and 1606–2003)"]
Redogörelse 2006/07:JO1 Justitieombudsmännens ämbetsberättelse
(The Swedish Parliamentary Ombudsmen Report for the period 1 July 2005 to 30 June 2006), English summary pp. 613–631.
Autism research
In the early 1980s, the concept of an '
autism spectrum
The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
' was introduced by
Lorna Wing
}
Lorna Gladys Wing (7 October 1928 – 6 June 2014) was an English psychiatrist. She was a pioneer in the field of childhood developmental disorders, who advanced understanding of autism worldwide, introduced the term Asperger syndrome in 1976 ...
and Gillberg. Gillberg has done extensive research into autism throughout his academic career. In 2003, a French and Swedish research team at the
Institut Pasteur
The Pasteur Institute (french: Institut Pasteur) is a French non-profit private foundation dedicated to the study of biology, micro-organisms, diseases, and vaccines. It is named after Louis Pasteur, who invented pasteurization and vaccines fo ...
and the psychiatric departments at Gothenburg University and
University of Paris
, image_name = Coat of arms of the University of Paris.svg
, image_size = 150px
, caption = Coat of Arms
, latin_name = Universitas magistrorum et scholarium Parisiensis
, motto = ''Hic et ubique terrarum'' (Latin)
, mottoeng = Here and a ...
, led by
Thomas Bourgeron
Thomas Bourgeron is a French scientist working at the Institut Pasteur. The group he leads has discovered the first monogenic mutations involved in autism. He is member of the French Academy of sciences
The French Academy of Sciences (French: ...
,
Marion Leboyer
Marion Leboyer (born 1957) is a French psychiatrist, university professor and hospital practitioner at the Paris-Est Créteil University (UPEC).
Biography
After completing her medical studies at Paris Descartes University, a master's degree ...
and Gillberg, discovered the first precisely identified
genetic mutation
In biology, a mutation is an alteration in the nucleic acid sequence of the genome of an organism, virus, or extrachromosomal DNA. Viral genomes contain either DNA or RNA. Mutations result from errors during DNA or viral replication, ...
s in individuals with
autism
The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
.
[Gosline, Anna]
"Roadmap to unravelling autism revealed".
''New Scientist'', 28 June 2005. Retrieved 20 August 2006. The team identified mutations altering two genes on the
X chromosome
The X chromosome is one of the two sex-determining chromosomes (allosomes) in many organisms, including mammals (the other is the Y chromosome), and is found in both males and females. It is a part of the XY sex-determination system and XO sex-d ...
which seem to be implicated in the formation of
synapses (communication spaces between
neuron
A neuron, neurone, or nerve cell is an electrically excitable cell that communicates with other cells via specialized connections called synapses. The neuron is the main component of nervous tissue in all animals except sponges and placozoa. N ...
s), in two families where several members are affected. Previous studies, such as the Paris Autism Research International Sib-Pair Study (PARIS), coordinated by Gillberg and Marion Leboyer, have more generally associated the X-chromosome regions with autism. The 2003 breakthrough indicated the location of the mutation to be on the NLGN4 gene and the NGLN3 gene. The mutation prevents a complete
protein
Proteins are large biomolecules and macromolecules that comprise one or more long chains of amino acid residues. Proteins perform a vast array of functions within organisms, including catalysing metabolic reactions, DNA replication, respo ...
from forming and is inherited from the mother.
Since 2006, Gillberg is involved in a large cross-disciplinary project titled "Autism spectrum conditions: the Gothenburg collaborative studies", financed by the
Swedish Research Council (Vetenskapsrådet), expected to run until the end of 2009.
[Vetenskapsrådet]
Detaljerad information för diarienr 2006–3449
: Gillberg, Christopher "Psychiatric diseases". 8 November 2006 (in Swedish). Retrieved 6 May 2008. The project is a collaboration between scientists specialized in child and youth
psychiatry
Psychiatry is the medical specialty devoted to the diagnosis, prevention, and treatment of mental disorders. These include various maladaptations related to mood, behaviour, cognition, and perceptions. See glossary of psychiatry.
Initial psych ...
,
molecular biology
Molecular biology is the branch of biology that seeks to understand the molecular basis of biological activity in and between cells, including biomolecular synthesis, modification, mechanisms, and interactions. The study of chemical and physi ...
and
neuroscience
Neuroscience is the scientific study of the nervous system (the brain, spinal cord, and peripheral nervous system), its functions and disorders. It is a multidisciplinary science that combines physiology, anatomy, molecular biology, development ...
and involves a genetic part with an international study team of French, British and U.S. researchers examining various aspects autism. Some of the results were published during 2007. The project also includes a genetic study on the
Faroe Islands
The Faroe Islands ( ), or simply the Faroes ( fo, Føroyar ; da, Færøerne ), are a North Atlantic island group and an autonomous territory of the Kingdom of Denmark.
They are located north-northwest of Scotland, and about halfway bet ...
.
Gillberg's criteria for Asperger syndrome
In 1989, Gillberg became instrumental in the publication of the first diagnostic criteria for
Asperger syndrome
Asperger syndrome (AS), also known as Asperger's, is a former neurodevelopmental disorder characterized by significant difficulties in Interpersonal relationship, social interaction and nonverbal communication, along with restricted and re ...
. They are applied in clinical practice due to the adhesion to the original description of
Hans Asperger
Johann Friedrich Karl Asperger (, ; 18 February 1906 – 21 October 1980) was an Austrian psychiatrist. He is remembered for his pioneering studies of autism, specifically in children. His name was given to Asperger syndrome, a form of autism ...
. All of the following six criteria must be met for confirmation of diagnosis:
#Severe impairment in reciprocal social interaction (at least two of the following)
##inability to interact with peers
##lack of desire to interact with peers
##lack of appreciation of social cues
##socially and emotionally inappropriate behavior
#All-absorbing narrow interest (at least one of the following)
##exclusion of other activities
##repetitive adherence
##more rote than meaning
#Imposition of routines and interests (at least one of the following)
##on self, in aspects of life
##on others
#Speech and language problems (at least three of the following)
##delayed development
##superficially perfect expressive language
##formal, pedantic language
##odd
prosody, peculiar voice characteristics
##impairment of comprehension including misinterpretations of literal/implied meanings
#Non-verbal communication problems (at least one of the following)
##limited use of gestures
##clumsy/gauche body language
##limited facial expression
##inappropriate expression
##peculiar, stiff gaze
#Motor clumsiness: poor performance on neurodevelopmental examination
Gillberg's criteria differ from those given in the
DSM
DSM or dsm may refer to:
Science and technology
* Deep space maneuver
* Design structure matrix or dependency structure matrix, a representation of a system or project
* Diagnostic and Statistical Manual of Mental Disorders
** DSM-5, the fifth ed ...
-IV-TR. Some scholars have therefore criticized them for "making it difficult to compare with other studies."
It has been argued that the failure of some research groups to replicate some of Gillberg's findings "may relate primarily to fundamental differences in diagnostic approach".
DAMP, MBD, and ADHD
In the 1970s, Gillberg played a leading role in developing the concept Deficits in Attention, Motor control and Perception (DAMP), a concept primarily used in
Scandinavia
Scandinavia; Sámi languages: /. ( ) is a subregion#Europe, subregion in Northern Europe, with strong historical, cultural, and linguistic ties between its constituent peoples. In English usage, ''Scandinavia'' most commonly refers to Denmark, ...
. The DAMP concept as used in more recent publications, refers to
Attention-deficit hyperactivity disorder
Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by excessive amounts of inattention, hyperactivity, and impulsivity that are pervasive, impairing in multiple contexts, and otherwise age-inappr ...
(ADHD) in combination with
Developmental Coordination Disorder
Developmental coordination disorder (DCD), also known as developmental motor coordination disorder, developmental dyspraxia or simply dyspraxia from the word 'praxis' meaning to do or act, is a neurodevelopmental disorder characterized by impair ...
(DCD). According to Gillberg, it constitutes a "subgroup of the diagnostic category of ADHD, conceptually similar – but not clinically identical – to the
WHO
Who or WHO may refer to:
* Who (pronoun), an interrogative or relative pronoun
* Who?, one of the Five Ws in journalism
* World Health Organization
Arts and entertainment Fictional characters
* Who, a creature in the Dr. Seuss book '' Horton He ...
concept of HKD (
hyperkinetic disorder
Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by excessive amounts of inattention, hyperactivity, and impulsivity that are pervasive, impairing in multiple contexts, and otherwise age-inappr ...
)" and is diagnosed on the basis of "concomitant attention deficit/hyperactivity disorder and developmental coordination disorder in children who do not have severe learning disability or cerebral palsy".
Some scholars disagree with the lumping of ADHD and DCD, with the argument that they are unrelated.
Gillberg stated in 2003 that, although he feels that there is a "very real issue of how to deal with the conflict between splitting (ADHD plus developmental coordination disorder (DCD)) and lumping (DAMP)," he nevertheless feels that "the DAMP construct has been helpful in identifying a group of children with ADHD and multiple needs that will not be self evident if the diagnosis is just ADHD or just DCD."
Before the Scandinavian studies, recognition that individuals with attention problems may also have difficulties with movement, perception, and memory had received little attention in studies.
According to various studies, half of the children with ADHD also have DCD.
With the development of the ADHD concept, the previous, less precise, category of ''Minimal Brain Dysfunction'' (MBD), "a term almost universally employed in child psychiatry and developmental paediatrics from the 1950s to the early 1980s"
was replaced. Gillberg began to study DAMP in the late 1970s, when ADHD was still called MBD and the DAMP concept has been adjusted as the term ADHD was introduced and became internationally used. Around 1990, DAMP had become a generally accepted diagnostic concept in two
Nordic countries
The Nordic countries (also known as the Nordics or ''Norden''; literal translation, lit. 'the North') are a geographical and cultural region in Northern Europe and the Atlantic Ocean, North Atlantic. It includes the sovereign states of Denmar ...
,
but when the
DSM-IV
The ''Diagnostic and Statistical Manual of Mental Disorders'' (DSM; latest edition: DSM-5-TR, published in March 2022) is a publication by the American Psychiatric Association (APA) for the classification of mental disorders using a common langua ...
appeared in 1994, DAMP became considered a redundant term in many countries, since DAMP is essentially equivalent to
ADHD
Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by excessive amounts of inattention, hyperactivity, and impulsivity that are pervasive, impairing in multiple contexts, and otherwise age-inapp ...
in combination with DCD as defined by
DSM-IV
The ''Diagnostic and Statistical Manual of Mental Disorders'' (DSM; latest edition: DSM-5-TR, published in March 2022) is a publication by the American Psychiatric Association (APA) for the classification of mental disorders using a common langua ...
.
Gillberg's four criteria for DAMP are:
*ADHD as defined in
DSM-IV
The ''Diagnostic and Statistical Manual of Mental Disorders'' (DSM; latest edition: DSM-5-TR, published in March 2022) is a publication by the American Psychiatric Association (APA) for the classification of mental disorders using a common langua ...
;
*
Developmental Coordination Disorder
Developmental coordination disorder (DCD), also known as developmental motor coordination disorder, developmental dyspraxia or simply dyspraxia from the word 'praxis' meaning to do or act, is a neurodevelopmental disorder characterized by impair ...
as defined in DSM-IV;
*Condition not better accounted for by
cerebral palsy
Cerebral palsy (CP) is a group of movement disorders that appear in early childhood. Signs and symptoms vary among people and over time, but include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensa ...
; and
*IQ higher than about 50
illberg, 2003: box 1
According to Gillberg, clinically severe form DAMP (or ADHD+DCD) affects about 1.5% of the general population of school age children; another few per cent are affected by more moderate variants. Boys are overrepresented; girls are currently probably underdiagnosed. There are many overlapping conditions, including conduct disorder, depression/anxiety, and academic failure. There is a strong link with autism spectrum disorders in severe DAMP. Familial factors and pre- and perinatal risk factors account for much of the variance. Psychosocial risk factors appear to increase the risk of marked psychiatric abnormality in DAMP. Outcome in early adult age was psychosocially poor in one study in almost 60% of unmedicated cases. About half of all cases with ADHD have DCD, and conversely, ADHD occurs in about half of all cases of DCD.
Gillberg has published around 80 papers on DAMP, ADHD and related conditions.
Legal case
One of Gillberg's research projects, the Gothenburg study,
[Hart, Deborah and Thomas Kennedy]
"Five percent of children may have DAMP"
''A Mind Odyssey: Science and Caring'', Royal College of Psychiatrists, London, 11 July 2001. Retrieved 20 August 2006. has become the center of a heated controversy. The controversy concerns the question to what extent the
Principle of Public Access, which in Sweden supports transparency in publicly funded activities, can be applied to sensitive data collected in medical studies involving human subjects.
[Osvald, Clara]
"Professor Christopher Gillberg fälldes".
("Professor Christopher Gillberg convicted") ''Ekot'', Sveriges Radio, 27 June 2005, in Swedish. Retrieved 20 August 2006. In 2003, Gothenburg University was ordered by the court to release medical records and other sensitive data about a group of children who had participated in a longitudinal psychiatric study done by Gillberg and other researchers, to two individuals under the Freedom of Information Act; this was done despite the researchers' assertion that
anonymization
Data anonymization is a type of information sanitization whose intent is privacy protection. It is the process of removing personally identifiable information from data sets, so that the people whom the data describe remain anonymous.
Overv ...
was not considered feasible due to the nature and length of the study (a small group of participants had been followed for a period of 16 years and the data included a combination of taped interviews, medical records, criminal records, school records, and psychiatric evaluations).
The court ordered the university to set conditions for the access so that the interests of the children and the families would be protected.
In April 2003, the university's Vice-Chancellor set the conditions: one of the persons requesting access, the
sociologist Eva Kärfve, would have to get her research project approved by the ethical review committee, and each concerned individual would have to consent before documents about her or him could be read by Eva Kärfve and
Leif Elinder, the other person who had requested access.
However, Kärfve and Elinder appealed the university's conditions and the Administrative Court of Appeal ruled that the conditions were unreasonable. In an analysis of the case, Sven Ove Hansson, professor and head of the Department of Philosophy and the History of Technology at the
Royal Institute of Technology (KTH), Stockholm, a former member of the Swedish Government Research Advisory Board, wrote: "
is particularly interesting to note that the Court of Administrative Appeal nullified the decision by Gothenburg University to require individual consent and approval from an ethical review committee before giving access to sensitive data on individual research subjects. These are two of the cornerstones of the scientific community's own system for protecting research subjects."
Background
Beginning in 1996,
pediatrician
Pediatrics ( also spelled ''paediatrics'' or ''pædiatrics'') is the branch of medicine that involves the medical care of infants, children, adolescents, and young adults. In the United Kingdom, paediatrics covers many of their youth until the ...
Leif Elinder criticized Gillberg's research and alleged that the numbers reported by Gillberg were made up.
[ ] Elinder became associated with the
sociologist Eva Kärfve at
Lund University
, motto = Ad utrumque
, mottoeng = Prepared for both
, established =
, type = Public research university
, budget = SEK 9 billion [witch hunts
A witch-hunt, or a witch purge, is a search for people who have been labeled witches or a search for evidence of witchcraft. The classical period of witch-hunts in Early Modern Europe and Colonial America took place in the Early Modern per ...]
and
medieval myths in Europe. They coordinated their criticism and Kärfve wrote a book, published in 2000, rejecting most of the research on DAMP, and especially Gillberg's.
Other psychiatrists and neuroscientists in Sweden defended the Gillberg group and argued that Elinder and Kärfve had crossed the line from scientific criticism to personal attacks and vilification.
[Bejerot, Susanne ''et al.']
"'Rättshaverist skadar dampforskningen'. Sex psykiatriforskare kräver ett slut på mångårig personlig kampanj"
('Litigious doctrinaire hurts damp research'. Six psychiatry researchers demand an end to the long-running personal campaign". Dagens Nyheter, 22 January 2003, p. A04 (A6 A2), in Swedish. Retrieved 20 August 2006. The conflict escalated further in 2002, when Kärfve and Elinder wrote separate letters to
Gothenburg University
The University of Gothenburg ( sv, Göteborgs universitet) is a university in Sweden's second largest city, Gothenburg. Founded in 1891, the university is the third-oldest of the current Swedish universities and with 37,000 students and 6000 s ...
, accusing the Gillberg group of scientific misconduct.
The accusations were investigated by the Ethics Council and dismissed.
Elinder and Kärfve also demanded access to the original research material for the main DAMP studies. Under a section of the Swedish
basic law that grants citizens access to government documents, Elinder and Kärfve were given full access to the documents by an administrative court.
[Kammarrätten i Göteborg 6 February 2003 Dom i mål nr 5741-2002][Kammarrätten i Göteborg 6 February 2003 Dom i mål nr 6208-2002] The university, the Gillberg group, and the participants of the study were strongly opposed to this decision, on the grounds that the material contained medical records and other sensitive information, and that the participants had been promised full confidentiality.
[Ahl, Viggo]
"Mitt liv är dömt till offentlighet"
(My life is condemned to public access). Göteborgs-Posten, 25 June 2003. Retrieved 20 August 2006. A higher court decided that neither the participants, the researchers, nor their institution, were formally entitled to appeal the decision.
[Regeringsrätten 4 April 2003 Avgörande i mål nr 1273-03] When all legal avenues had been exhausted, two of Gillberg's coworkers and a university administrator destroyed the 12–27 years old research material. In the legal aftermath, Gillberg and the
rector
Rector (Latin for the member of a vessel's crew who steers) may refer to:
Style or title
*Rector (ecclesiastical), a cleric who functions as an administrative leader in some Christian denominations
*Rector (academia), a senior official in an edu ...
of
Gothenburg University
The University of Gothenburg ( sv, Göteborgs universitet) is a university in Sweden's second largest city, Gothenburg. Founded in 1891, the university is the third-oldest of the current Swedish universities and with 37,000 students and 6000 s ...
were found guilty of "misuse of office" for not complying with the administrative court's decision.
The two researchers (both chief physicians at
Sahlgrenska University Hospital
The Sahlgrenska University Hospital ( Swedish: ''Sahlgrenska Universitetssjukhuset'') is a hospital network associated with the Sahlgrenska Academy at the University of Gothenburg in Gothenburg, Sweden. With 17,000 employees the hospital is the lar ...
, one of them married to Gillberg), defended their decision to shred the files by referring to the promises of confidentiality that had been issued to the subjects of the study and the letters of objection that had been received from the families that they did not want their personal data used or shared with the private individuals. They argued that turning the files over would have exposed the researchers and the university to potential lawsuits from the subjects for failing to honor a written agreement.
[Gillberg, Christopher]
"Forskare ger falska löften"
(Researchers give false promises). ''Brännpunkt'', Svenska Dagbladet, 13 May 2006. Retrieved 20 August 2006. They were convicted and fined for destruction of government property.
In July 2005, the lower criminal court in Gothenburg upheld the right of Kärfve and Elinder to see any data from the Gothenburg study still held by the university. The court fined Gillberg for "misuse of office".
In 2006, Gillberg lodged a complaint with the
European Court of Human Rights
The European Court of Human Rights (ECHR or ECtHR), also known as the Strasbourg Court, is an international court of the Council of Europe which interprets the European Convention on Human Rights. The court hears applications alleging that a ...
(ECHR).
On 17 June 2008, the ECHR announced a "Decision to Communicate" in the case and a request for comment was submitted to the Swedish government, with a 15 October 2008 deadline for the initial response to the charges.
Reaction to the ruling
The Swedish court's decision to grant the two critics access to the data was controversial. When the study participants were contacted by Gillberg and asked if they would be prepared to have the data released, all but one family refused.
Citing that, and the promise of confidentiality given to the participants as a precondition, Gillberg and the other researchers decided to not turn over the personal data. 267 Swedish doctors signed a letter in support of Gillberg's decision to not hand over the data.
["267 läkare stöder Christopher Gillberg mot JO". ''Dagens Medicin'' 23 March 2005.] After the verdict, the chairman of the Central Ethical Review Board of Sweden, Johan Munch, said that in Swedish legislation, the Principle of Public Access is incompatible with promises of absolute confidentiality, and that the Central Ethical Review Board therefore no longer approves such promises.
[Osvald, Clara]
"Professor Christopher Gillberg fälldes".
("Professor Christopher Gillberg convicted") ''Ekot'', Sveriges Radio, 27 June 2005, in Swedish. Retrieved 20 August 2006. Original sentence in Swedish: "Enligt Johan Munch som är ordförande i Centrala etikprövningsnämnden fungerar den svenska lagstiftningen med offentlighetsprincipen inte tillsammans med den här typen av förbindelser om absolut sekretess. Därför godkänner etikprövningsnämnden inte den typen av löften i samband längre. " According to Martin Ingvar of the
Karolinska Institute
The Karolinska Institute (KI; sv, Karolinska Institutet; sometimes known as the (Royal) Caroline Institute in English) is a research-led medical university in Solna within the Stockholm urban area of Sweden. The Karolinska Institute is consist ...
, medical researchers in Sweden will be forced to change the current practice because of the verdict. Ingvar told media that medical studies in Sweden must now adhere to a strict anonymization encoding, even in extensive studies like Gillberg's which contain large amounts of clinical material collected over long periods of time, in spite of the increase in cost and the larger margins of error.
Elisabeth Rynning, a professor of medical law at the
University of Uppsala
Uppsala University ( sv, Uppsala universitet) is a public research university in Uppsala, Sweden. Founded in 1477, it is the oldest university in Sweden and the Nordic countries still in operation.
The university rose to significance during ...
, questioned whether the court had been fully aware of the relevant laws. Access to these kinds of records may only be granted for the purpose of research or for the collection of statistics. Elinder had not stated any such purpose in his application, and Kärfve had only argued that the material would be ''useful'' for her research, not that it would actually ''be used'' in a research project. She was in fact not allowed to use the material in her research project, since that would have required a previous approval by an ethics committee. There was also the problem that Elinder and Kärfve requested the material as private citizens, while at the same time stating that they needed it in their professional capacities. If they had requested the material as representatives of their employers, the court would not have jurisdiction. Finally Rynning questioned how the court could decide that no one would be hurt, as the law requires, if Elinder and Kärfve were given full access to the data. Several participants had testified to the court that they would be deeply offended and hurt if Elinder and Kärfve could read their medical records.
[Rynning, Elisabeth. "Domarnas okunskap om lagen tvingade forskare till lagbrott" (The judges' lack of knowledge about the law forced researchers to break the law). '']Dagens Nyheter
''Dagens Nyheter'' (, ), abbreviated ''DN'', is a daily newspaper in Sweden. It is published in Stockholm and aspires to full national and international coverage, and is widely considered Sweden's newspaper of record.
History and profile
''Da ...
'' 14 May 2005.
The Swedish
Parliamentary Ombudsman Parliamentary Ombudsman ( fi, Eduskunnan oikeusasiamies, sv, Riksdagens ombudsman, is, Umboðsmaður Alþingis, da, Folketingets Ombudsmand, no, Sivilombudet) is the name of the principal ombudsman institutions in Finland, Iceland, Denmark, Nor ...
also investigated the affair.
In the 18-page summary dedicated to the case in the yearly report by the Ombudsman, Gillberg and Gothenburg University are criticized for violating the Freedom of Information Act and thus Kärfve's and Elinder's civil right to access to records belonging to the state.
Both the lower court and the appeal court were unanimous in finding Gillberg guilty of breach of duty arising from failure to comply in regards to the release of documents; additionally, the Supreme Court of Sweden did not agree to retry Gillberg's breach of duty case. In response to the concerns raised by Gillberg at the trial that a situation had arisen for him whereby "he was prevented by medical ethics and research ethics from disclosing information about the participants in the study and their next-of-kin", the Swedish Parliamentary Ombudsman stated that "the international declarations drawn up by the
World Medical Association
The World Medical Association (WMA) is an international and independent confederation of free professional medical associations representing physicians worldwide. WMA was formally established on September 18, 1947 and has grown to 115 national m ...
and also the European Convention
..do not categorise them as undertakings that can be considered to take priority over Swedish law." The Parliamentary Ombudsman also stated that, "it is not possible to make decisions on issues concerning confidentiality until the release of a document is requested. It follows therefore that the assurances of confidentiality cited above cannot take priority over the law as it stands or a court's application of the statutes".
Law revisions and debate
In 2003, a bill was introduced in the Swedish parliament,
Riksdagen
The Riksdag (, ; also sv, riksdagen or ''Sveriges riksdag'' ) is the legislature and the supreme decision-making body of Sweden. Since 1971, the Riksdag has been a unicameral legislature with 349 members (), elected proportionally and s ...
, due to the secrecy issues raised during the trial that granted the two private individuals access to sensitive personal data. This bill did not pass, but in 2004, a new act on ethical review of research involving humans was introduced. Changes were put in place in order to strengthen the protection for human subjects participating in medical research and to expand the scope of the ethical councils, while bringing the Swedish legislation closer to the European Commission directive. The official act governing medical research was further adjusted in 2008: ethical review is now legally required in Sweden, the review committees have official status,
and consent can be withdrawn by participants in medical research at any point. However, voices in the medical research community have raised concerns about law revisions' lack of attention to additional safeguards for researchers falsely accused of scientific misconduct and are calling for procedures that would ensure that scientific misconduct investigations are handled in a correct and legally secure manner.
The debate about the case between representatives from the
social science
Social science is one of the branches of science, devoted to the study of societies and the relationships among individuals within those societies. The term was formerly used to refer to the field of sociology, the original "science of soc ...
s and
natural science
Natural science is one of the branches of science concerned with the description, understanding and prediction of natural phenomena, based on empirical evidence from observation and experimentation. Mechanisms such as peer review and repeatab ...
s has continued in the popular press and in media. In 2007, the controversy resulted in a book by science journalist Vanna Beckman, with a focus on the larger issues of
biologism
Biological determinism, also known as genetic determinism, is the belief that human behaviour is directly controlled by an individual's genes or some component of their physiology, generally at the expense of the role of the environment, whether i ...
and
sociologism as they played out in the debate, a book which also described the ideological battle against research in
psychology
Psychology is the scientific study of mind and behavior. Psychology includes the study of conscious and unconscious phenomena, including feelings and thoughts. It is an academic discipline of immense scope, crossing the boundaries betwe ...
and
psychiatry
Psychiatry is the medical specialty devoted to the diagnosis, prevention, and treatment of mental disorders. These include various maladaptations related to mood, behaviour, cognition, and perceptions. See glossary of psychiatry.
Initial psych ...
driven by various religious groups. In April 2008, a hotly debated television documentary aired on Swedish television, where Kärfve and Erlinder returned to the spotlight to air their concerns about the
shredding of the documents.
[Hultin, Kicki and Tina Thunander]
Fördärvet
. One-hour documentary. ''Sveriges Television'', 14 April 2008. (In Swedish).
However, the program was shut down in 2008 after the Board of Appeal condemned it for its lack of impartiality in relation to the said programme.
See further
*
Gothenburg Study of Children with DAMP
Notes
Selected publications by Gillberg
Journal articles
*
*
*
*
*
*
*
*
Books
*
*
*
*
*
*
*
*
* Coleman M, Gillberg C, ''The Autisms'', Oxford University Press, 2012
* Gillberg C, ''ADHD and its many associated problems'', Oxford University Press, 2014
* Gillberg C, Råstam M, Fernell E (red.) ''Barn och Ungdomspsykiatri'', Natur & Kultur, 2015
* Gillberg C,
ESSENCE Om ADHD, autism och andra utvecklingsavvikelser', Natur & Kultur, 2018
External links
Child psychiatric diagnoses – Christopher Gillberg– Iriss, 16 November 2007
– Information about the Philips Prize
''European Child & Adolescent Psychiatry''(journal)
The Autism Puzzle (A
BBC #REDIRECT BBC #REDIRECT BBC
Here i going to introduce about the best teacher of my life b BALAJI sir. He is the precious gift that I got befor 2yrs . How has helped and thought all the concept and made my success in the 10th board exam. ...
...
in ''Looking Up'' (an autism newsletter) 3:12, 2005.
Official web page in Swedish, 21 August 2005. (''Riksförbundet Attention'' is a national Swedish association for people with neuropsychiatric disabilities.)
Press release in Swedish. Undated, 2006. (''Riksföreningen Autism'' is the national Swedish association for people with autism and autism-like disorders.)
The Swedish Child Neuropsychiatry Science Foundation. Letter detailing the actions by Christopher Gillberg opponents, the involvement of public figures and the media, and the legal process.