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Icelandic Law on a Health-Sector Database
Association for Ethics in Science and Medicine
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MANNVERND is an association formed to promote ethical standards in
medical research, science and in the biotechnology industry in Iceland. The
association strongly opposes the Icelandic government's Law on a
Health-Sector Database. The association believes that this law infringes
upon accepted medical, scientific and commercial standards. The association
fought hard against the Bill on a Health-Sector Database during
parliamentary debate. Now that the law has been enacted the fight is
directed against the implementation of the law. The controversy is
summarized here(see also Mannvernd's agenda).
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04.05.1999
Mannvernd lodges a formal complaint to the EFTA Surveillance Authority
On behalf of Mannvernd SupremeCourt Advocate, Stefán Geir ?órisson,
lodges a complaint concerning the failure by the Government of Iceland
to honour its obligations under the EEA Agreement, with the entry into
force of the Act No. 139/1998 on a Health Sector Database.
02.05.1999
Decoding developments in Iceland
Bernhard Palsson of Univ. Califdornia at San Diego and Snorri
Thorgeirsson of of National cancer Institute in Bethesda MD write in
Nature Biotechnology May 1999. Available in .pdf format here
28.04.1999
26 % of the public fears misuse of the information
12 % intend to opt-out of the database, 21 % are undecided or refuse to
answer. Results of a poll in the Icelandic daily, Dagur
24.04.1999
The Prime Minister and the Bishop of the Church of Iceland exchange of
letters because of a short story
exPORT Mountains, Inc.irritates the PM and amuses the Bishop
24.04.1999
exPORT Mountains, Inc. A short story by Örn Bár?ur Jónsson
``Peter Glacierson was like the northern gannet, the sula. ... He was
incredibly sharp and wherever he went he saw the glitter of gold.'' Örn
Bár?ur heads the education department of the Church of Iceland
23.04.1999
World Medical Association opposes Icelandic gene database
The British Medical Journal reports
23.04.1999
Wellcome Trust and drug giants fund gene marker database of SNP markers
"The members of the consortium believe that free and unrestricted
access to this powerful tool will benefit scientific inquiry in
industry, government, academic, and independent laboratories," The
British Medical Journal reports
17.04.1999
The World Medical Association, Inc. confirms its committment to patient
confidentiality.
Having heard representations this week from both the Icelandic
Government and the Icelandic Medical Association about the creation of
a national health database in Iceland, the World Medical Association
Council has reaffirmed its commitment to patient confidentiality, the
principle of informed consent and the freedom of scientific research.
14.04.1999
The Assent of A Nation, Genethics and Iceland
Melvin G McInnis, M.D., MRCPsych, Associate Professor of Psychiatry at
Johns Hopkins writes a critical review about the Icelandic database
issue in Clinical Genetics, Vol. 55 issue 4, bls. 234 - 239 Here is a
copy as a WORD.doc
08.03.1999
Árni Björnsson, ret. chief of Plastic Surgery, refuses to hand over
confidential health records to database
The purpose of publishing this letter can be seen as a protective act
for the writers patients, protection for himself and a precedent for
other phycisans who will soon be in the same circumstances.
08.03.1999
Professor Leroy Hood on the monopoly on the Icelandic Health Sector
Database in Berlingske Tidende in Copenhagen
`... or else we risk that individual firms can block the global
research'
04.03.1999
Conflict of interest in the National Bioethics Committee
Minister of Health, confirmed that Dr. Gudmundur Thorgeirsson is
serving both as chairman of the National Bioethics Committee and on the
scientific board of deCODE genetics
22.02.1999
``DNA PROJECT RAISES FEW FEARS IN ICELAND'' Chicago Tribune
Lara Weber, Tribune Staff Writer, February 21, 1999.
22.02.1999
``Attention Shoppers: Special Today -- Iceland's DNA'' CNN
Jeffrey P. Kahn, Ph.D., M.P.H. on CNN ethics matters: Selling the right
to mine for genetic secrets ... Turning consent on its head ...
Population research, personal risk
22.02.1999
Parliamentary queries to the Minister of Health by Hjörleifur
Guttormsson, Member of Parliament
Guttormsson queries about conflict of interest in the National
Bioethics Committee, about the relationship of health workers to the
licensee, about the HSD licence, about payments, about safety in
operating the HSD, about execution of the law on HSD, and about the use
of information from the HSD
22.02.1999
``Profiling an Entire Nation'' ABC News
Richard Gizbert, 18 February. Iceland has OK'd a plan to map genetic
profiles of each of its citizens, and sell access to the information.
19.02.1999
``A tort ou à raison, l'Islande veut être le laboratoire de la génétique
de demain'' LE TEMPS
Luc Debraine writes in Le Temps in Schwitzerland 17 February
19.02.1999
``An Icelandic saga unveils life's secrets'' The Times
Generations of medical records could be a Pandora's Box,writes Michael
Binyon on 13 February
14.02.1999
``Medical records posted on Internet'' Student discovers error at
University of Michigan
``This isn't the first time patient privacy has been broached ...
Associated Press contributed to this report''
10.02.1999
``Iceland: The selling of a nation's genetic code'' by Jackie Crosby /
Star Tribune
"That disturbs me. What will they find out about me? How will they use
this information? What about my young children?" ... "We don't want to
be 270,000 Trumans in a medical version of the Truman Show,"
08.02.1999
People Are Not Commodities. By R.C. LEWONTIN
,,At least the modern Icelanders' Viking ancestors made no pretense
that their raids and piratical activities were in the public
interest.`` R.C Lewontin professor at Harvard writes an Op-Ed article
for the The New York Times
08.02.1999
Iceland, the Nation of Clones
,,The actual motives behind all this are, of course, ambition and good
old love of lucre, and everyone seems to have the genes for those.``
Simon Mawer writes an Op-Ed article for The New York Times
06.02.1999
Professor R.C. Lewontin replies to J.B. Petursson of DV
R.C. Lewontin answers DV after vituperative attacks from deCODE's
Stefansson
06.02.1999
Promise profit and health benefits but fulfill no promises
ProfessorR.C. Lewontin of Harvard on the moneymaking schemes of science
in an interview with DV:
06.02.1999
Hijacked Medical Records. Bogi Andersen writes in the Washington Post
``Embarrassingly, the Icelandic government has ignored our constitution
and sided with a Delaware corporation over considerations for patients'
rights, individual liberties and scientific progress.''
02.02.1999
The myth of uniform, blond and blue eyed Icelanders dispelled
Mr. Hannibalsson, Iceland's Ambassador to Washington, writes in the
Washington Post and dispells the myth of the uniformity of the
Icelanders
01.02.1999
Kari Stefanson's Pyrrhic Victory
``Romans are not the only ones who are resilient. Mannvernd is
resilient ...'' Editorial in Icelandic daily DV by Mr. Jonas
Kristjansson, chief editor
01.02.1999
Exclusive tools for the future
Bogi Andersen and Einar Arnason in BMJ:``Instead of giving deputy
secretaries an assignment to provide misleading information to the
international scientific and medical communities to cover up ethical
deficiencies of the law, our government should change or abolish it.''
29.01.1999
``Exaggeration and nonsense''
Kari Stefansson on the New York Timesarticle by a world-famous
professor of genetics. ``- that an Icelandic professor and opponent of
the database added to fuel the fire,'' Stefansson says.
29.01.1999
Boycott
The world-famous Harvard-professor, Richard C. Lewontin, suggested
publicly last year that Iceland might be excluded from international
scientific cooperation
29.01.1999
Kari Stefansson slams the phone
... when the threesome were on the air in Australian radio it became
clear that it was all to no avail. Kari Stefansson slammed the phone.
The Australians, however, were quite surprised...
18.12.1998
Iceland ``sold down the river.'' Make a PROTEST here
Bill on Health Sector Database voted into law. A disgrace. How the vote
in parliament went; who said YES, who said NO, and who were ABSENT.
15.01.1999
Clinton's State of the Union speech
``As more of our medical records are stored electronically, the threats
to all our privacy increase. Because Congress has given me the
authority to act if it does not do so by August, one way or another, we
can all say to the American people we will protect the privacy of
medical records and we will do it this year.''
15.01.1999
The only issue is scientific advances
Bogi Andersen of UC San Diego after reading article by John Schwartz of
The Washington Post. ``When the CEO of deCODE states: `We're not going
to let people die simply because it might be abused', one is reminded
of OJ Simpson declaring that he is looking for the real killers of his
wife.''
14.01.1999
Viking wars
``Doctors and scientists are threatening to sabotage the transfer of
the medical, genetic and genealogical records of all Icelanders to a
private company.'' writes Andy Coghlan in the New Scientist 9 January
1999
12.01.1999
``Iceland to make its Genetic Code a Commodity''
The Washington Post. John Schwartz writes.
12.01.1999
``Private company wins rights to Icelandic gene database''
British Medical Journal 1999; 318:11. Abi Berger, science correspondent
writes about the Database
02.01.1999
``WEBSITE OF THE WEEK. British Medical Journal 1999; 318:66''
"News of a government planning to sell the genetic information of its
entire population to a single company (DeCODE) must raise a few
eyebrows among those concerned about civil liberties"
18.12.1998
``has the Independence Party accepted money from the Icelandic deCODE
genetics or it's partners?''
The Icelandic newspaper Dagur asks Prime Minister Mr. David Oddsson,
chairman of the IP
18.12.1998
The Faroese reject collaboration with Kari
The Icelandic newspaper DV reports on Kari Stefansson's forays into
neigboring countries
12.12.1998
New bosses, new customs
Geneticist Alfred Arnason questions Kari Stefansson about MS
12.12.1998
Letter to Mr. Guy Nohra
16 Icelandic physicians write an open letter to deCODE Delaware
investors and board members and ask about their position on ethical
behavior
11.12.1998
Status of the bill on Health Sector Database
Latest news and commentaries on the case
11.12.1998
Kari reaching for the hot springs
DV on December 10. 1998: deCODE getting monopolies in every field
11.12.1998
Supreme Court Ruling: fisheries control unconstitutional
Analogy with monopoly granting of health sector database
10.12.1998
Report of the University of Iceland Medical School´s Committee on
medical databases
No bill regarding such a database can be enacted into law before we
have updated legislation on privacy protection and enacted new
legislation regarding collection, processing and use of medical and
genetic information
10.12.1998
A biased database hurts people
Einar Árnason's Lecture at the meeting of Mannvernd in the Nordic
House, Reykjavik on December 3. 1998
10.12.1998
The GREENS in the European Parliament
Greens Support Call for Suspension of the Draft Icelandic Law.
07.12.1998
"Proposal for a health database is not acceptable in its present form"
"My opinion is that the current proposal for a health database is not
acceptable in its present form, on grounds of consent, confidentiality
or the granting of an effective monopoly of a crucial scientific
resource to a single company." David King, Editor GenEthics News
07.12.1998
"To shoot oneself in the foot"
Pall Kr. Palsson, from the inner circle of the Prime Minister's
advisers, rejects the proposed monopoly
06.12.1998
"No information about patients unless they permit
44 General Practioners sign a letter to Parliament
05.12.1998
Genes for sale
Editorial, New Scientist, 5 December 1998: The database question in
Iceland raises ethical questions of major importance. These issues
concern everybody, everywhere. The move is of global importance. They
are not private matters of the Icelanders. There is an appeal: "For the
sake of us all, Iceland must get it right." "Unfortunately for Iceland
[and for the world], the details of its bill look all wrong."
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04.12.1998 Decoding genes in Iceland
writes John Edwards
03.12.1998 A summary of the many opinions submitted to the Health Committee
of Alþingi
This summary shows that only those who collaborate with or are hired by
deCODE Genetics agree with the Bill. All other parties reject the bill
and its main ideas!
02.12.1998 The Competition and Fair Trade Authority rejects the monopoly
The Authority concludes that granting sole rights to the operation of a
database is in conflict with the EEA contract and Icelandic law on
competition....
02.12.1998 The Icelandic Office for Human Rights
opposes the bill. Excerpts from the opinion to parliament...
01.12.1998 The Bishop of the Church of Iceland breaks the "deathly silence"
Tread slowly and with utmost care in these matters, referrring to the
database.
30.11.1998 The Health committee of Althingi
concludes its examination. The main critisism against the bill has not
been taken into account by the committee. A monopoly and "presumed
consen"t are still proposed.
30.11.1998 Found and then lost?
The newspaper DV on discrepancies in reporting by deCODE workers in the
description of deCODE's MS-gene discovery
30.11.1998 "Has deCODE Genetics found the MS gene?"
The Icelandic newspapers DV and Morgunbladid and TV station 2 reported
in late August 1998 that scientists at deCODE Genetics have found the
MS gene. Or have they? Some deCODE scientists don't seem so sure
anymore....
27.11.1998 The National Bioethics Committee warns against..
the Bill on the Health Sector Database and urges that legislation of
this kind not be passed...
27.11.1998 The Nordic Committee on Bioethics expresses concerns
"The bill does not seem to provide satisfactory regulation for the
operation of the database. We think that it is necessary that all
future research on the data be reviewed by a science ethics
committee...."
24.11.1998 The base cracked and the church's deathly silence
Vilhjalmur Arnason, Professor of Philosophy: " ... issue of such
ethical importance ... be dealt with in this way without the pillars of
free debate making their voice heard. Or is the church perhaps not one
of their number?"
22.11.1998 Kari Stefansson about overstating the case abroad
"These assertions are completely wrong", says Kari Stefansson about
headlines in the Icelandic newspaper DV on November 20th....
22.11.1998 Kari stretches the truth abroad
Kari Stefansson reports a "remarkable discovery" in a foreign science
journal. "Overstates the case", says Professor Reynir Tomas
Geirsson....
12.11.1998 Confusion of terms?
"Ópersónugreinanlegur", an Icelandic word meaning that a person is not
identifiable. The bill does not use the concept "anonymous"...
7.11.1998 "Assault on Democracy"
Says neuropsychiatrist Ernir Snorrason, co-founder/major shareholder of
deCODE Genetics, in a frank interview with DV, a leading Icelandic
newspaper (also in swedish, click here)
03.11.1998 Ernir Snorrason, one of the three founders of deCODE Genetics and
a major stockholder, opposes the database Bill
02.11.1998 Icelandic Medical Association Ethics Committe: Comments on the
Database Bill
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The board of Mannvernd is
* Sigmundur Guðbjarnarson,
Professor,
former Rector University of
Iceland
* Petur Hauksson, MD, Chairman
of
Gedhjalp
Mannvernd * Laufey Tryggvadottir,
PO Box 94, 112 Reykjavik epidemiologist
Tel: 354-881-7194 * Anna Atladottir, medical
mannvernd@simnet.is secretary
* Fridrik R. Jonsson, engineer