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4-Patents: Commercial genetic database of all Icelanders!



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Forwarded by: Gen-ethisches Netzwerk Berlin


The following appeal for help reached us a few days ago. The Icelandic 
association Mannvernd - Icelanders for ethical science and medicine - 
needs international support in its fight against the Icelandic health 
database bill. 

That bill was made for an enterprise planned for the last four years that 
can be seen as the beginning of a new path in genetic data 
(non-)protection and commercialisation of genetic data in medical and 
pharmaceutical research. 

deCODE Genetics, an Icelandic Corporation financiated by several US-, was 
enabled by the database bill to establish a database of all Icelanders, 
not only the living but also the dead ones, and to commercialize all the 
data. A five-year-contract with Hoffmann La Roche over 200 Millionen 
US-Dollar was already concluded.

Please support the Icelandic resistance against the bill.

Uta Wagenmann, Gen-ethisches Netzwerk Berlin


 

MANNVERND, ICELANDERS FOR ETHICAL SCIENCE
AND MEDICINE, NEEDS YOUR HELP!!!!!

The controversial health database bill passed in Althing, the
Icelandic parliament, on Dec. 17, 1998. It was approved by a
vote of 37 in favor, 20 saying no, and 6 MPs absent. It was
signed by the President of Iceland, Mr. Olafur Ragnar Grimsson,
on Dec. 22, 1998.

Several wide-ranging changes were made to the bill
prior to Dec. 17. Personal protection was decreased by
stating specifically that the licensee use unencrypted
health data. Even more blatant is the new provision in
the bill that geneticizes the database, namely the health
data can be analyzed with a distinct database containg
genetic information. Formerly it was to contain only
health information from hospital charts and doctors'
records.

For those who have been following the discussion,
it will be of interest to know that the bill is now in
fact a completely new bill--a result of the collusion
between the Ministry of Health, the government, the
government majority on the Committee for Health and
Insurance and deCODE--and the database has now
become the Icelandic DNA-surveillance bill or the
pharmacogenetic wonderland bill (see letter by
Bogi Andersen to the editor, Science, Dec. 11, 1998,
p. 1993; Martin Enserink: "Iceland OKs Private
Health Databank," Science, January 1, 1999, p. 13;
John Schwartz: "For Sale in Iceland," Wash. Post,
January 12, 1999 and Int. Herald. Tribune, Jan.
13, 1999; and Richard C. Lewontin: "A
Human Population for Sale," New York Times,
January 23, 1999).

If there was any doubt as to whether an individual will be
personally identifiable, now it is certain that every
person can be traced, either individually or through
pedigrees, by using genetic tracers or DNA sequences,
in the near future (cf. also the opinion of the Icelandic
Data Protection Committe). The consequences of including
genetic information are momentous. Therefore:

1. The database bill should not have been made a law
nor  should it be implemented, because of ethical, privacy,
consumer and human rights concerns.

2. If there is to be a health/genetic database in spite of
these concerns, informed consent and independent
ethical review committees should at least be required.
This is in accordance with the Nuernberg Declaration
of 1947 and the World Medical Association Agreement
of 1964 (Helsinki declaration).

In a prior version of the bill an article stated that a
committee was to be established to determine which
scientists should be allowed to do research utilizing the
database. This article was deleted in the final version of
the bill, the one that became law. Instead, access will be
negotiated case-by-case between deCODE and institutions.

The Icelandic Research Council which supported the bill
abruptly withdrew its support following an emergency
meeting on Dec. 14 because of the inclusion of genetic data
in the proposed database and this infraction of free scientific
research (this sense of urgency was heightened due to the
fact that deCODE in collaboration with Icelandic biologists
and biochemists has attempted to gain monopoly on research
on high-temperature resistant microbes).

Likewise, the former President of Iceland, Mrs. Vigdis
Finnbogadottir, who sat on the Board of deCODE has
resigned due to conflict with her role as President of
UNESCO's World Commission on Scientific Knowledge
and Technology. She resigned at a Board meeting on Nov.
18 but it was not made public until a month later after
Mannvernd, the Icelandic Association for Ethics in
Science and Medicine, had discovered and reported
this to the press.

Parliamentary majority spokesmen have discussed the
possibility of including prescription information from
drug stores in the database! This is not specified in the bill
but might be in later revisions, according to newspapers
supporting the government. The financial implications
of this possibility are enormous and so are the ethical
considerations. This would be similar to turning a gold
mine into a diamond mine.

A petition was signed by 44 general practitioners (about one
third of health station practitioners) urging that the bill not
be passed and declaring that they would only send information
about their patients to the database with their written approval.

The same petition was signed by 109 hospital specialists, thereby
making the database potentially seriously flawed and eventually
impossible to create.

The governing boards of hospitals and health centers could decide
to send all information in their records to the database, and the
doctors would be obliged to comply according to the database law
which states, after a last minute revision, that doctors are allowed
to send information to the database, i.e. the doctors cannot refuse
by claiming it is illegal. Thus the law coerces doctors to participate
in a research activity that many of them consider unethical, incl.
the Committee on Ethics of the Icelandic Medical Association.

Although roughly 150 doctors signed this petition upon an
exceedingly short notice(out of a total of 900 doctors) deCODE's
response was typical. They claimed that the majority of Icelandic
doctors were on their side thus hoping to sow seeds of discontent
among doctors and convince the general public that the database
would work. Yet, the the solid support behind the ruling body of
the Icelandic Medical Association belies such claims.

Nevertheless, deCODE's PR may be indiciative of the next steps
in the database drama, namely fierce attempts by deCODE and
the government (!) to convince or coerce doctors to comply with
the rule of law in stark violation of ethical standards. Moreover,
it is to be expected that the Surgeon General will drag his feet
though he is supposed, according to the law, to inform the citizens
of Iceland what are their options vis-a-vis refusing to be included
in the database.
For further details please refer to the website of Mannvernd,
for news updates in English.

In particular, consult a graphical presentation of the views of
over 50 agencies and experts which submitted highly critical
opinions to the Health Committee of Althing as the 2nd version
of the bill was debated this fall; to no avail as these opinions
were callously ignored by the government majority on the
Committee for Health and Insurance, nor was it made possible
to solicit new expert testimony after the drastic changes of the
bill prior to the final round in Althing in mid-December:

http://www.simnet.is/mannvernd/english/articles/03.12.1998_summary_of_opini
ons.html

Also see the associations' English language home page:

http://www.simnet.is/mannvernd/english/index.html

The website of deCODE is:

http://www.database.is

The database has already been discussed in the internet
news discussion groups in response to an earler worldwide
alert made by the Icelandic Mental Health Alliance (IMHA).
Countless letters of concern and protest have been dispatched
to the government from all over the world. The experience
with letters of protest from Amnesty International to dictators
suggests that though such letters do not have an immediate
impact, they may eventually seriously undermine the
confidence and resolve of the Icelandic government.

deCODE's representatives have unsuccessfully tried to
rebuke information provided by IMHA in internet
discussion groups. Thanks to discussants such as
DENDRITE's David Oaks (dendron@efn.org),
these counter-claims have been convincingly refuted.

E.g.
deCODE: "It bears pointing out that personal data will be
encrypted, first by hospital staff to the Data Protection
Commission, which will process the data, further encrypted
to the HCDB where a third encryption process will take place."

Oaks: "A lot of people still won't trust their VISA numbers
to spammers."

deCODE's statement that personal information will be
anonymous is false. Anonymous means that names and ID's
have been eliminated. The database will include ID's
that, although encrypted, can be used to trace individuals,
as explained by encryption expert Dr. Ross Anderson's report:

http://www.cl.cam.ac.uk/~rja14/iceland/iceland.html

Although the bill was passed by Althing much work
needs to be done, regulations written, agreements
made with the licensee etc.

Mannvernd, Icelanders for Ethics in Science and Medicine
plans to inform the public about the possible hazards being
registered in the database, and assist citizens to opt out, i.e.
by sending requests to the Surgeon General not to be registered.
This is of paramount importance as it will be impossible to
delete information already entered or check the accuracy of
database information pertaining to oneself.

Furthermore, we will urge doctors to respect their ethical oath
and demand that confidentiality be not violated. That entails that
they should send no information to the database without the
explicit permission of the patient (informed consent).

The Icelandic database bill has been considered by numerous
foreign experts (see opinions on Mannvernd's website) and
is considered in the Economist (Dec. 5-12, 1998) and New Scientist
(Dec. 5th, 1998) to set a precedent of how medical and genetic
databases in other countries could be constructed and misused in
the future.

This biotechnological disaster in the making is of international
concern and importance. We consider ourselves being on the
outpost of this battle for users' rights in new genetic research
and important biotechnology developments and we need all
the support we can get.

Foreign intervention at this moment may have a crucial
effect upon future course of events.

Please write letters of concern/protest to

Prime Minister Mr. David Oddsson,
Stjornarradshusinu
Laekjatorg
Reykjavik
Iceland
E-mail: postur@for.stjr.is
Fax: 00354+562 4014

&

Minister of Health Ms. Ingibjorg Palmadottir
Arnarhvoli
Reykjavik
Iceland
E-mail: postur@htr.stjr.is
Fax: 00354+551 9165

&

Surgeon General dr. Sigurdur Gudmundsson
Landlaeknisembaettinu
Laugavegi 116
Reykjavik
Iceland
E-mail: postur@landlaeknir.is
Fax: 00354+510.1919

with a copy to Mannvernd,

yours sincerely,

Petur Hauksson, chairman
Icelandic Mental Health Alliance (IMHA; Gedhjalp)
Tryggvagotu 9
101 Reykjavik
Iceland

Also co-chair of Mannvernd, Icelanders for Ethics in Science and
Medicine

peturh@itn.is
gedhjalp@isholf.is

For further information, please contact:

Prof. Einar Arnason
Institue of Biology
University of Iceland
Grensasvegur 12
108 Reykjavik
Iceland
Tel.: 00354+525.4613
fax.: 00354+525.4069
e-mail: einar@lif.hi.is

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