WRITTEN QUESTION E-2402/01 by Erik Meijer (GUE/NGL) to the Commission. Implications for citizens' rights and commercial interests of compulsory participation in large-scale genetic research in Iceland.
Date: 2001-08-21
Institutions: European Parliament, Provisional data
Subjects: European Economic Area, Iceland, cross-frontier data flow, fundamental rights, genetics, medical data, protection of privacy

C 147 E/16

Official Journal of the European Communities

EN

20.6.2002

Answer given by Mrs de Palacio on behalf of the Commission

(3 December 2001)

The Commission would inform the Honourable Member that, as a rule, the European Ombudsman does
not divulge names of complainants in his annual report.

It is suggested that the Honourable Member addresses further questions to the Ombudsman.

(2002/C 147 E/016)

WRITTEN QUESTION E-2402/01

by Erik Meijer (GUE/NGL) to the Commission

(21 August 2001)

Subject: Implications for citizens’ rights and commercial interests of compulsory participation in large-scale

genetic research in Iceland

Is the Commission aware that Iceland has adopted legislation making the country an international
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test area for large-scale genetic research, which involves the compulsory participation of its inhabitants as
test subjects? Is it aware that this means that personal medical information held by GPs and hospitals and
DNA data for the whole population are able to be stored centrally in a database and linked to family trees
recorded over many centuries, and that this material is able to be made available to the company ‘Decode’,
which uses it for purposes of research for the international pharmaceutical industry, whilst citizens of
Iceland are not allowed, as a result of court judgments, to have data on themselves or their ancestors
removed from this central database?

Is Iceland also making itself, through this legislation, an international test area for the ethical and
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legal aspects of protection of privacy in respect of genetic data, with considerably less protection being
provided than is currently usual at an international level? Is the Commission aware of any other countries
taking similar measures, apart from Singapore which is comparable in some respects? Is this course of
action at odds with EU rules on privacy?

Does the Commission agree that, under the Icelandic model, commercial

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interests are strongly
favoured over individual interests when balancing the three interests concerned, namely the general interest
in medical research, the individual interests of human beings who may be disadvantaged by this and the
commercial interests of the pharmaceutical companies concerned? And if not, why not?

Source: Norwegian documentary ‘Decoding the Icelanders’, broadcast by IKON-TV Netherlands, 1 August
2001

(2002/C 147 E/017)

WRITTEN QUESTION E-2403/01

by Erik Meijer (GUE/NGL) to the Commission

(21 August 2001)

Subject: Implications of large-scale genetic research in Iceland for the protection of privacy and patients’

rights in the EU

1. What are the implications of the Icelandic scheme referred to in my previous series of questions,
which makes participation in large-scale genetic research compulsory in respect of cooperation agreements
between Iceland and the EU?

To what extent are Icelandic data used by companies established in EU Member States? By what

2.
companies?