Christopher Gillberg
Encyclopedia
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
at Gothenburg University
in Gothenburg
, Sweden
, and an honorary professor at the Institute of Child Health (ICH)
, University College London
. He has also been a visiting professor at the universities of Bergen
, New York
, Odense
, St George's (University of London)
, San Francisco
, and Strathclyde
.
Gillberg is known for his research of autism
in children, Asperger syndrome
, Tourettes syndrome, Fragile X syndrome
, Autism Spectrum Disorder (ASD), ADHD, and anorexia nervosa
. He is the founding editor of the journal European Child & Adolescent Psychiatry, and is the author and editor of many scientific and educational books. He is the recipient of several scientific awards, including the Philips Nordic Prize 2004 for neurological research, and he has more than 300 scientific papers listed in Medline
. Additionally, Gillberg has become known internationally for his contributions to pioneering research projects into the genetics of autism.
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 Publicity (offentlighetsprincipen) to medical records and other personal data about a group of children participating in an early longitudinal study on ADHD/DAMP, commenced in 1977 at Gothenburg University. 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 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. Gillberg and two chief physician
s 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
in writing before giving informed consent
on behalf of their children. However, the court ruled that all files related to the study were to be released under the Swedish Principle of Publicity. 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. 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.
In 2009, Carl XVI Gustav of Sweden presented Gillberg with The King's Medal for his contributions in the field of child and adolescent psychiatry.
' was introduced by Lorna Wing
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 and the psychiatric departments at Gothenburg University and University of Paris
, led by Thomas Bourgeron
, Marion Leboyer and Gillberg, discovered the first precisely identified genetic mutations in individuals with autism
. The team identified mutations altering two genes on the X chromosome
which seem to be implicated in the formation of synapses (communication spaces between neuron
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
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. The project is a collaboration between scientists specialized in child and youth psychiatry
, molecular biology
and neuroscience
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
.
. Gillberg's criteria most closely resemble the original description of Hans Asperger
, and for this reason, some clinicians consider them the first choice in clinical practice. All of the following six criteria must be met for confirmation of diagnosis:
Gillberg's criteria differ from those given in the DSM
-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".
. The DAMP concept as used in more recent publications, refers to Attention-deficit hyperactivity disorder
(ADHD) in combination with Developmental Coordination Disorder (DCD). According to Gillberg, it constitutes a "subgroup of the diagnostic category of ADHD, conceptually similar - but not clinically identical - to the WHO
concept of HKD (hyperkinetic disorder)" 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
, but when the DSM-IV appeared in 1994, DAMP became considered a redundant term in many countries, since DAMP is essentially equivalent to ADHD in combination with DCD as defined by DSM-IV. Gillberg's four criteria for DAMP are:
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.
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: "[I]t 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."
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
, whose research had been devoted to early witch hunts
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. The conflict escalated further in 2002, when Kärfve and Elinder wrote separate letters to Gothenburg University
, 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. 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. A higher court decided that neither the participants, the researchers, nor their institution, were formally entitled to appeal the decision. 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
of Gothenburg University
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, 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. 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
(ECHR). On June 17, 2008, the ECHR announced a "Decision to Communicate" in the case and a request for comment was submitted to the Swedish government, with a October 15, 2008 deadline for the initial response to the charges.
Elisabeth Rynning, a professor of medical law at the University of Uppsala, 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.
The Swedish Parliamentary Ombudsman
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
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".
The debate about the case between representatives from the social sciences
and natural sciences 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 and sociologism
as they played out in the debate, a book which also described the ideological battle against research in psychology
and psychiatry
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.
Psychiatry
Psychiatry is the medical specialty devoted to the study and treatment of mental disorders. These mental disorders include various affective, behavioural, cognitive and perceptual abnormalities...
at Gothenburg University
Gothenburg University
The University of Gothenburg is a university in Sweden's second largest city, Gothenburg.- Character :The University of Gothenburg is the third-oldest Swedish university, and with 24,900 full-time students it is also among the largest universities in the Nordic countries...
in Gothenburg
Gothenburg
Gothenburg is the second-largest city in Sweden and the fifth-largest in the Nordic countries. Situated on the west coast of Sweden, the city proper has a population of 519,399, with 549,839 in the urban area and total of 937,015 inhabitants in the metropolitan area...
, Sweden
Sweden
Sweden , officially the Kingdom of Sweden , is a Nordic country on the Scandinavian Peninsula in Northern Europe. Sweden borders with Norway and Finland and is connected to Denmark by a bridge-tunnel across the Öresund....
, and an honorary professor at the Institute of Child Health (ICH)
UCL Institute of Child Health
The UCL Institute of Child Health is an academic department of the Faculty of Biomedical Sciences of University College London located in London, United Kingdom. It is a leading biomedical research centre and has a history in children's medical research which dates back to its founding.ICH...
, University College London
University College London
University College London is a public research university located in London, United Kingdom and the oldest and largest constituent college of the federal University of London...
. He has also been a visiting professor at the universities of Bergen
University of Bergen
The University of Bergen is located in Bergen, Norway. Although founded as late as 1946, academic activity had taken place at Bergen Museum as far back as 1825. The university today serves more than 14,500 students...
, New York
New York University
New York University is a private, nonsectarian research university based in New York City. NYU's main campus is situated in the Greenwich Village section of Manhattan...
, Odense
Odense University
Odense University, now Syddansk Universitet Odense , has been part of the University of Southern Denmark since 1998 of which it forms the biggest campus. It is the university of Odense, Denmark's third largest city, and the island of Funen. When abbreviated, the university motto becomes FIONIA, the...
, St George's (University of London)
St George's, University of London
St George's, University of London is a medical school located in London, United Kingdom and a constituent college of the federal University of London...
, San Francisco
University of San Francisco
The University of San Francisco , is a private, Jesuit/Catholic university located in San Francisco, California. Founded in 1855, USF was established as the first university in San Francisco. It is the second oldest institution for higher learning in California and the tenth-oldest university of...
, and Strathclyde
University of Strathclyde
The University of Strathclyde , Glasgow, Scotland, is Glasgow's second university by age, founded in 1796, and receiving its Royal Charter in 1964 as the UK's first technological university...
.
Gillberg is known for his research of autism
Autism
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their...
in children, Asperger syndrome
Asperger syndrome
Asperger's syndrome that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development...
, Tourettes syndrome, Fragile X syndrome
Fragile X syndrome
Fragile X syndrome , Martin–Bell syndrome, or Escalante's syndrome , is a genetic syndrome that is the most commonly known single-gene cause of autism and the most common inherited cause of intellectual disability...
, Autism Spectrum Disorder (ASD), ADHD, and anorexia nervosa
Anorexia nervosa
Anorexia nervosa is an eating disorder characterized by refusal to maintain a healthy body weight and an obsessive fear of gaining weight. Although commonly called "anorexia", that term on its own denotes any symptomatic loss of appetite and is not strictly accurate...
. He is the founding editor of the journal European Child & Adolescent Psychiatry, and is the author and editor of many scientific and educational books. He is the recipient of several scientific awards, including the Philips Nordic Prize 2004 for neurological research, and he has more than 300 scientific papers listed in Medline
MEDLINE
MEDLINE is a bibliographic database of life sciences and biomedical information. It includes bibliographic information for articles from academic journals covering medicine, nursing, pharmacy, dentistry, veterinary medicine, and health care...
. Additionally, Gillberg has become known internationally for his contributions to pioneering research projects into the genetics of autism.
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 Publicity (offentlighetsprincipen) to medical records and other personal data about a group of children participating in an early longitudinal study on ADHD/DAMP, commenced in 1977 at Gothenburg University. 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 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. Gillberg and two chief physician
Physician
A physician is a health care provider who practices the profession of medicine, which is concerned with promoting, maintaining or restoring human health through the study, diagnosis, and treatment of disease, injury and other physical and mental impairments...
s involved in the study stated that medical ethics principles
Declaration of Helsinki
The Declaration of Helsinki is a set of ethical principles regarding human experimentation developed for the medical community by the World Medical Association . It is widely regarded as the cornerstone document of human research ethics...
prevented them from turning over sensitive personal and medical data as the participants' parents had been promised confidentiality
Confidentiality
Confidentiality is an ethical principle associated with several professions . In ethics, and in law and alternative forms of legal resolution such as mediation, some types of communication between a person and one of these professionals are "privileged" and may not be discussed or divulged to...
in writing before giving informed consent
Informed consent
Informed consent is a phrase often used in law to indicate that the consent a person gives meets certain minimum standards. As a literal matter, in the absence of fraud, it is redundant. An informed consent can be said to have been given based upon a clear appreciation and understanding of the...
on behalf of their children. However, the court ruled that all files related to the study were to be released under the Swedish Principle of Publicity. 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. The following year, Gillberg, as head of the University's Neuropsychiatric Department
Neuropsychiatry
Neuropsychiatry is the branch of medicine dealing with mental disorders attributable to diseases of the nervous system. It preceded the current disciplines of psychiatry and neurology, in as much as psychiatrists and neurologists had a common training....
, 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.
In 2009, Carl XVI Gustav of Sweden presented Gillberg with The King's Medal for his contributions in the field of child and adolescent psychiatry.
Autism research
In the early 1980s, the concept of an 'autism spectrumAutism spectrum
The term "autism spectrum" is often used to describe disorders that are currently classified as pervasive developmental disorders. Pervasive developmental disorders include autism, Asperger syndrome, Childhood disintegrative disorder, Rett syndrome and Pervasive Developmental Disorder Not Otherwise...
' was introduced by Lorna Wing
Lorna Wing
Lorna Wing, MD, FRCPsych, is an English psychiatrist and physician.As a result of having an autistic daughter, she became involved in researching developmental disorders, particularly autism spectrum disorders. She joined with other parents of autistic children to found the National Autistic...
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 and the psychiatric departments at Gothenburg University and University of Paris
University of Paris
The University of Paris was a university located in Paris, France and one of the earliest to be established in Europe. It was founded in the mid 12th century, and officially recognized as a university probably between 1160 and 1250...
, led by Thomas Bourgeron
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.-References:...
, Marion Leboyer and Gillberg, discovered the first precisely identified genetic mutations in individuals with autism
Autism
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their...
. The team identified mutations altering two genes on the X chromosome
X chromosome
The X chromosome is one of the two sex-determining chromosomes in many animal species, including mammals and is common in both males and females. It is a part of the XY sex-determination system and X0 sex-determination system...
which seem to be implicated in the formation of synapses (communication spaces between neuron
Neuron
A neuron is an electrically excitable cell that processes and transmits information by electrical and chemical signaling. Chemical signaling occurs via synapses, specialized connections with other cells. Neurons connect to each other to form networks. Neurons are the core components of the nervous...
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
Protein
Proteins are biochemical compounds consisting of one or more polypeptides typically folded into a globular or fibrous form, facilitating a biological function. A polypeptide is a single linear polymer chain of amino acids bonded together by peptide bonds between the carboxyl and amino groups of...
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
Swedish Research Council
The Swedish Research Council is a Swedish government agency established in 2001, with the responsibility to support and develop basic scientific research. Its objective is for Sweden to be a leading nation in scientific research...
(Vetenskapsrådet), expected to run until the end of 2009. The project is a collaboration between scientists specialized in child and youth psychiatry
Psychiatry
Psychiatry is the medical specialty devoted to the study and treatment of mental disorders. These mental disorders include various affective, behavioural, cognitive and perceptual abnormalities...
, molecular biology
Molecular biology
Molecular biology is the branch of biology that deals with the molecular basis of biological activity. This field overlaps with other areas of biology and chemistry, particularly genetics and biochemistry...
and neuroscience
Neuroscience
Neuroscience is the scientific study of the nervous system. Traditionally, neuroscience has been seen as a branch of biology. However, it is currently an interdisciplinary science that collaborates with other fields such as chemistry, computer science, engineering, linguistics, mathematics,...
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
Faroe Islands
The Faroe Islands are an island group situated between the Norwegian Sea and the North Atlantic Ocean, approximately halfway between Scotland and Iceland. The Faroe Islands are a self-governing territory within the Kingdom of Denmark, along with Denmark proper and Greenland...
.
Gillberg's criteria for Asperger syndrome
In 1989, Gillberg became instrumental in the publication of the first diagnostic criteria for Asperger syndromeAsperger syndrome
Asperger's syndrome that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development...
. Gillberg's criteria most closely resemble the original description of Hans Asperger
Hans Asperger
Hans Asperger was an Austrian pediatrician, after whom Asperger syndrome was named. He wrote over 300 publications, mostly concerning autism in children.-Biography:...
, and for this reason, some clinicians consider them the first choice in clinical practice. 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 prosodyProsody (linguistics)In linguistics, prosody is the rhythm, stress, and intonation of speech. Prosody may reflect various features of the speaker or the utterance: the emotional state of the speaker; the form of the utterance ; the presence of irony or sarcasm; emphasis, contrast, and focus; or other elements of...
, 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
Diagnostic and Statistical Manual of Mental Disorders
The Diagnostic and Statistical Manual of Mental Disorders is published by the American Psychiatric Association and provides a common language and standard criteria for the classification of mental disorders...
-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 ScandinaviaScandinavia
Scandinavia is a cultural, historical and ethno-linguistic region in northern Europe that includes the three kingdoms of Denmark, Norway and Sweden, characterized by their common ethno-cultural heritage and language. Modern Norway and Sweden proper are situated on the Scandinavian Peninsula,...
. The DAMP concept as used in more recent publications, refers to Attention-deficit hyperactivity disorder
Attention-deficit hyperactivity disorder
Attention deficit hyperactivity disorder is a developmental disorder. It is primarily characterized by "the co-existence of attentional problems and hyperactivity, with each behavior occurring infrequently alone" and symptoms starting before seven years of age.ADHD is the most commonly studied and...
(ADHD) in combination with Developmental Coordination Disorder (DCD). According to Gillberg, it constitutes a "subgroup of the diagnostic category of ADHD, conceptually similar - but not clinically identical - to the WHO
Who
Who may refer to:* Who , an English-language pronoun* who , a Unix command* Who?, one of the Five Ws in journalism- Art and entertainment :* Who? , a 1958 novel by Algis Budrys...
concept of HKD (hyperkinetic disorder)" 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
Nordic countries
The Nordic countries make up a region in Northern Europe and the North Atlantic which consists of Denmark, Finland, Iceland, Norway and Sweden and their associated territories, the Faroe Islands, Greenland and Åland...
, but when the DSM-IV appeared in 1994, DAMP became considered a redundant term in many countries, since DAMP is essentially equivalent to ADHD in combination with DCD as defined by DSM-IV. Gillberg's four criteria for DAMP are:
- ADHD as defined in DSM-IV;
- Developmental Coordination Disorder as defined in DSM-IV;
- Condition not better accounted for by cerebral palsy; and
- IQ higher than about 50 [Gillberg, 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.
Controversy
One of Gillberg's research projects, the Gothenburg study, 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. 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 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
Royal Institute of Technology
The Royal Institute of Technology is a university in Stockholm, Sweden. KTH was founded in 1827 as Sweden's first polytechnic and is one of Scandinavia's largest institutions of higher education in technology. KTH accounts for one-third of Sweden’s technical research and engineering education...
(KTH), Stockholm, a former member of the Swedish Government Research Advisory Board, wrote: "[I]t 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 and legal battle
Beginning in 1996, pediatricianPediatrics
Pediatrics or paediatrics is the branch of medicine that deals with the medical care of infants, children, and adolescents. A medical practitioner who specializes in this area is known as a pediatrician or paediatrician...
Leif Elinder criticized Gillberg's research and alleged that the numbers reported by Gillberg were made up. Elinder became associated with the sociologist
Sociology
Sociology is the study of society. It is a social science—a term with which it is sometimes synonymous—which uses various methods of empirical investigation and critical analysis to develop a body of knowledge about human social activity...
Eva Kärfve at Lund University
Lund University
Lund University , located in the city of Lund in the province of Scania, Sweden, is one of northern Europe's most prestigious universities and one of Scandinavia's largest institutions for education and research, frequently ranked among the world's top 100 universities...
, whose research had been devoted to early witch hunts
Witch-hunt
A witch-hunt is a search for witches or evidence of witchcraft, often involving moral panic, mass hysteria and lynching, but in historical instances also legally sanctioned and involving official witchcraft trials...
and medieval myths
Parzival
Parzival is a major medieval German romance by the poet Wolfram von Eschenbach, in the Middle High German language. The poem, commonly dated to the first quarter of the 13th century, is itself largely based on Chrétien de Troyes’s Perceval, the Story of the Grail and mainly centers on the Arthurian...
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. The conflict escalated further in 2002, when Kärfve and Elinder wrote separate letters to Gothenburg University
Gothenburg University
The University of Gothenburg is a university in Sweden's second largest city, Gothenburg.- Character :The University of Gothenburg is the third-oldest Swedish university, and with 24,900 full-time students it is also among the largest universities in the Nordic countries...
, 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
Basic Law
The term basic law is used in some places as an alternative to "constitution", implying it is a temporary but necessary measure without formal enactment of constitution. A basic law is either a codified constitution, or in countries with uncodified constitutions, a law given to have constitution...
that grants citizens access to government documents, Elinder and Kärfve were given full access to the documents by an administrative court. 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. A higher court decided that neither the participants, the researchers, nor their institution, were formally entitled to appeal the decision. 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
The word rector has a number of different meanings; it is widely used to refer to an academic, religious or political administrator...
of Gothenburg University
Gothenburg University
The University of Gothenburg is a university in Sweden's second largest city, Gothenburg.- Character :The University of Gothenburg is the third-oldest Swedish university, and with 24,900 full-time students it is also among the largest universities in the Nordic countries...
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, 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. 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
European Court of Human Rights
The European Court of Human Rights in Strasbourg is a supra-national court established by the European Convention on Human Rights and hears complaints that a contracting state has violated the human rights enshrined in the Convention and its protocols. Complaints can be brought by individuals or...
(ECHR). On June 17, 2008, the ECHR announced a "Decision to Communicate" in the case and a request for comment was submitted to the Swedish government, with a October 15, 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. 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. According to Martin Ingvar of the Karolinska Institute, 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, 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.
The Swedish Parliamentary Ombudsman
Parliamentary Ombudsman
The Parliamentary Ombudsman is the principal ombudsman authority in Finland, in Sweden and Iceland, charged with the supervision of the public authorities...
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
World Medical Association
The World Medical Association is an international and independent confederation of free professional Medical Associations, therefore representing physicians worldwide...
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, 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 sciences
Social sciences
Social science is the field of study concerned with society. "Social science" is commonly used as an umbrella term to refer to a plurality of fields outside of the natural sciences usually exclusive of the administrative or managerial sciences...
and natural sciences 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 and sociologism
Social determinism
Social determinism is the hypothesis that social interactions and constructs alone determine individual behavior ....
as they played out in the debate, a book which also described the ideological battle against research in psychology
Psychology
Psychology is the study of the mind and behavior. Its immediate goal is to understand individuals and groups by both establishing general principles and researching specific cases. For many, the ultimate goal of psychology is to benefit society...
and psychiatry
Psychiatry
Psychiatry is the medical specialty devoted to the study and treatment of mental disorders. These mental disorders include various affective, behavioural, cognitive and perceptual abnormalities...
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.
External links
- Child psychiatric diagnoses - Christopher Gillberg - Institute for Research and Innovation in Social Services, 14 January 2008
- Philips Prize - Information about the Philips Prize
- European Child & Adolescent Psychiatry (journal)
- The Autism Puzzle (A BBCBBCThe British Broadcasting Corporation is a British public service broadcaster. Its headquarters is at Broadcasting House in the City of Westminster, London. It is the largest broadcaster in the world, with about 23,000 staff...
documentary featuring Gillberg) - An interview with Gillberg in Looking Up (an autism newsletter) 3:12, 2005.
- Kärfe, Elinder, and others defend their accusations - "Rapid responses" submitted to British Medical Journal, 2004
- Various responses to Kärfve Gothenburg UniversityGothenburg UniversityThe University of Gothenburg is a university in Sweden's second largest city, Gothenburg.- Character :The University of Gothenburg is the third-oldest Swedish university, and with 24,900 full-time students it is also among the largest universities in the Nordic countries...
, 2001 (in Swedish) - Riksförbundet Attention supports Gillberg Official web page in Swedish, August 21, 2005. (Riksförbundet Attention is a national Swedish association for people with neuropsychiatric disabilities.)
- Riksföreningen Autism supports Gillberg Press release in Swedish. Undated, 2006. (Riksföreningen Autism is the national Swedish association for people with autism and autism-like disorders.)
- Letter to the Swedish Chancellor of Justice 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.