[Med-privacy] Swedish case
Peter Marshall
pwm@comcast.net
Fri, 4 Feb 2005 13:39:03 -0800
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BMJ=A0=A02005;330:273=A0(5=A0February), doi:10.1136/bmj.330.7486.273-a
Clash over public access rights and patient confidentiality sparks trial
Caroline White
London
A world expert and two of his university colleagues have been charged=20
with court obstruction by the Swedish parliamentary ombudsman and now=20
face a public criminal trial as a result of a clash over rights to=20
access public data and the need to maintain patient confidentiality.
Christopher Gillberg, professor of child and adolescent psychiatry at=20=
the University of Gothenburg, Sweden, and St George's Hospital, London;=20=
Gunnar Svedberg, vice chancellor of the University of Gothenburg; and=20
Arne Wittl=F5v, chairman of the university's board of directors, could=20=
face fines if found guilty. The trial is scheduled for late spring.
The move follows attempts by community paediatrician Dr Leif Elinder=20=
of Uppsala and Eva K=E4rfve, associate professor of sociology at the=20
University of Lund to acquire the legal right to gain access to years=20
of confidential data about patients with the disorder. Professor K=E4rfve=20=
claimed that the data gathered in Professor Gillberg's research had=20
various numerical "inconsistencies."
A court order granted Professor K=E4rfve access to the data last year.=20=
Three of Professor Gillberg's university colleagues destroyed the data=20=
in May, however, to protect patient confidentiality ( BMJ 2004;329:=20
72[Free Full=A0Text]).
Dr Elinder first approached the parliamentary ombudsman in August=20
2003, prompting an investigation by the deputy state prosecutor, which=20=
began in January 2004, he said.
Dr Elinder said that he had wanted the Swedish Research Council to=20
look at Professor Gillberg's data; "But the council can't force the=20
university to [comply] if they refuse." He said that was why he had=20
taken the matter to the ombudsman.
In an email to the BMJ, Professor Svedberg confirmed that the charge=20=
had been brought. The relationship between the principle of public=20
access to official records and the law governing patient=20
confidentiality needed to be clarified, he wrote.
Asked by the BMJ if he had any comments to make on the charge,=20
Professor Gillberg replied, "I have done nothing wrong. I have upheld=20
the ethics that apply to all medical professionals all over the world.=20=
For this I [and the two others] have been prosecuted."
A colleague, Professor Elias Eriksson, of the department of=20
pharmacology, told the BMJ that Professor Gillberg had had "massive=20
support" from clinicians and researchers in Sweden for his stance.=20
"Regardless of the outcome of the forthcoming trial, Gillberg and his=20
coworkers have acted just as they should," he said.
In a separate legal case, the university has also been forced to bring=20=
charges against the perpetrators of the data destruction, in accordance=20=
with Swedish law, which forbids destruction of archived material=20
collected with public money.
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<=
fontfamily><param>Helvetica</param><bigger>BMJ=A0=A02005;330:273=A0(5=A0Fe=
bruary),
doi:10.1136/bmj.330.7486.273-a
</bigger></fontfamily><fontfamily><param>Skia</param><bigger><bigger>=20
=
</bigger></bigger></fontfamily><bold><fontfamily><param>Helvetica</param><=
bigger><bigger><bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger><bigger><x-tad-bigger>Clash over public
access rights and patient confidentiality sparks trial
=
</x-tad-bigger></bigger></bigger></bigger></bigger></bigger><bigger>Caroli=
ne
=
White</bigger></bigger></fontfamily></bold><fontfamily><param>Skia</param>=
<bigger><bigger>=20
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger>London</bigger></fontfamily></italic><fontfamily><param>Skia</par=
am><bigger>=20
<bigger>A world expert and two of his university colleagues have
been</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>charged
with court obstruction by the Swedish
parliamentary</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>ombudsman
and now face a public criminal trial as a result
of</bigger></bigger><x-tad-bigger> </x-tad-bigger><bigger><bigger>a
clash over rights to access public data and the need to
maintain</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>patient
confidentiality.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> Christopher Gillberg, professor of
child and adolescent psychiatry</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>at the University of Gothenburg,
Sweden, and St George's Hospital,</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>London; Gunnar Svedberg, vice
chancellor of the University of</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>Gothenburg; and Arne Wittl=F5v, chairman
of the university's</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>board of directors, could face fines if
found guilty. The trial</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>is scheduled for late
spring.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> The move follows attempts by community
paediatrician Dr Leif</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>Elinder of Uppsala and Eva K=E4rfve,
associate professor</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>of sociology at the University of Lund
to acquire the legal</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>right to gain access to years of
confidential data about patients</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>with the disorder. Professor K=E4rfve
claimed that the data</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>gathered in Professor Gillberg's
research had various numerical</bigger></bigger><x-tad-bigger>
=
</x-tad-bigger><bigger><bigger>"inconsistencies."</bigger></bigger><x-tad-=
bigger>=20
</x-tad-bigger><bigger><bigger> A court order granted Professor K=E4rfve
access to the data</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>last year. Three of Professor
Gillberg's university colleagues</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>destroyed the data in May, however, to
protect patient confidentiality</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>(
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger><bigger>BMJ</bigger></bigger></fontfamily></italic><fontfamily><p=
aram>Skia</param><bigger><bigger>=20
2004;329:
=
72<color><param>0000,0000,EEEE</param>[</color><color><param>CCCC,0000,000=
0</param>Free</color><color><param>0000,0000,EEEE</param>
Full=A0Text]</color>).</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> Dr Elinder first approached the
parliamentary ombudsman in August</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>2003, prompting an investigation by the
deputy state prosecutor,</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>which began in January 2004, he
said.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> Dr Elinder said that he had wanted the
Swedish Research Council</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>to look at Professor Gillberg's data;
"But the council can't</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>force the university to [comply] if
they refuse." He said that</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>was why he had taken the matter to the
ombudsman.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> In an email to the
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger><bigger>BMJ</bigger></bigger></fontfamily></italic><fontfamily><p=
aram>Skia</param><bigger><bigger>,
Professor Svedberg confirmed that the</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>charge had been brought. The
relationship between the principle</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>of public access to official records
and the law governing patient</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>confidentiality needed to be clarified,
he wrote.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> Asked by the
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger><bigger>BMJ</bigger></bigger></fontfamily></italic><fontfamily><p=
aram>Skia</param><bigger><bigger>
if he had any comments to make on the
charge,</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>Professor
Gillberg replied, "I have done nothing wrong. I
have</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>upheld
the ethics that apply to all medical professionals
all</bigger></bigger><x-tad-bigger> </x-tad-bigger><bigger><bigger>over
the world. For this I [and the two others] have been
prosecuted."</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> A colleague, Professor Elias Eriksson,
of the department of</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>pharmacology, told the
=
</bigger></bigger></fontfamily><italic><fontfamily><param>Helvetica</param=
><bigger><bigger>BMJ</bigger></bigger></fontfamily></italic><fontfamily><p=
aram>Skia</param><bigger><bigger>
that Professor Gillberg had had
"massive</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>support"
from clinicians and researchers in Sweden for his
stance.</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>"Regardless
of the outcome of the forthcoming trial,
Gillberg</bigger></bigger><x-tad-bigger> =
</x-tad-bigger><bigger><bigger>and
his coworkers have acted just as they should," he
said.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger> In a separate legal case, the
university has also been forced</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>to bring charges against the
perpetrators of the data destruction,</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>in accordance with Swedish law, which
forbids destruction of</bigger></bigger><x-tad-bigger>
</x-tad-bigger><bigger><bigger>archived material collected with public
money.</bigger></bigger><x-tad-bigger>=20
</x-tad-bigger><bigger><bigger>=20
</bigger></bigger></fontfamily>=
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