From the NEW YORK TIMES Saturday January 23 1999:
A HUMAN POPULATION FOR SALE
R.C. Lewontin
In one way or another human bodies have been commodities for a
very long time. Prostitution and chattel slavery are, after all,
biblical, but it has remained for modern capitalism to create an
open market for blood, sperm and body parts. More recently it has
become possible to buy space in someone else's womb and we are
promised that embryos and tissues grown from them are the soon to
be available in the parts catalogue. It has remained, however,
for Icelanders, a nation original in many respects, to carry the
commoditization process to its final conclusion by making its
entire population into a captive biomedical commodity. It is a
curious irony that Iceland, the only known national society to
have been formed precisely to escape any form of state power, and
whose national ideal has been embodied in the uncompromising
individualism of the ancient Sagas, should be the first nation to
embark on such an enterprise.
As a result of a law, narrowly passed last month by the
Icelandic Parliament , a single licensee, deCode Genetics Inc.
will have the exclusive right to create, operate and mine for
profit a National Health Sector Database. The database will
collect and process personal, health and genetic information on
virtually every person in Iceland and deCode will sell its
findings to pharmaceutical companies interested in creating
diagnostic routines and drugs. One agreement to exploit the
genetic information obtained using the database has already been
concluded between deCode and the pharmaceutical company,
Hoffman-LaRoche.
This conversion of the health and genetic status of the
entire population of Iceland into a tool for the profit of a
single enterprise has been marked by a blatant political cynicism
that is usually ascribed, with typical snobbery, to Mexico and
Indonesia, but certainly not to northern Europeans. There is an
immense gap between what is said about the operation of the
database and its reality, a gap large enough to be visible even
from thousands of miles away.
First, there is the matter of consent of the subjects. While
the database's backers claim that no one who objects will be
included, the actual process is a complete reversal of the
standard demand for informed consent in medical research. The
burden will fall on individuals to request exclusion in part or
in whole from the database and no explanations will be offered of
the uses to which one's records might be put. Only the most
politically aware or sophisticated people will demand exclusion,
while the great bulk of the population will be passive captives
of deCode and its backers.
Second, much is made of the Icelandic nationality of the
company and its founder Kari Stefanson, appealing to the
patriotism, national pride and national self-interest of
Icelanders. But deCode is owned by a Delaware paper corporation
and its financial backers include Advent International, Atlas
Venture, Arch Venture Partners, Falcon Technologies, Medical
Science Partners and Polaris Venture Partners, American firms
whose representatives comprise five of the seven directors of
deCode. A useful sixth is Vigdis Finnbogadottir, former President
of Iceland. It does, indeed, begin to sound like Mexico.
Third, there is a transparent dodge employed to meet the
objection that the health of Icelanders and others would be
better served if the general community of biological research had
unrestricted access to the information in the database, because
science is supposed to make better progress when information is
freely shared. DeCode's supporters claim that others may indeed
have access to the information, but this access needs to be
reasonably controlled and some priority must be afforded to
deCode to make it worthwhile for them to form and manage the
database. However, the bill passed by Parliament explicitly
states that no one may use the database whose "research may be
expected to have an adverse effect upon the licensee's commercial
interest." But any research in the public domain carried out by
non-profit government laboratories or universities can be
expected to have an "adverse effect upon the licensee's
commercial interest." And who gets to decide? An official
committee of three, one of whom is appointed by the Minister of
Health, who introduced the bill into Parliament, and one of whom
is appointed by the licensee!
At least the ancient Icelanders made no pretense that their
raids and piratical activities were in the public interest.
_________________________________________________________________
R.C. Lewontin, a geneticist, is Professor of Biology at Harvard.
FURTHER DETAILS:
> For further details please refer to the website of Mannvernd,
> for news updates in English.
>
http://www.simnet.is/mannvernd/english/articles/03.12.1998_summary_of_opinio
ns.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 ([log in to unmask]),
> 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: [log in to unmask]
> Fax: 00354+562 4014
>
> &
>
> Minister of Health Ms. Ingibjorg Palmadottir
> Arnarhvoli
> Reykjavik
> Iceland
>
> E-mail: [log in to unmask]
> Fax: 00354+551 9165
>
> &
>
> Surgeon General dr. Sigurdur Gudmundsson
> Landlaeknisembaettinu
> Laugavegi 116
> Reykjavik
> Iceland
>
> E-mail: [log in to unmask]
> 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
>
> [log in to unmask]
> [log in to unmask]
>
> 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: [log in to unmask]
%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
|
