Human Genetic Databases: Towards a Global Ethical Framework
Annual Call for Projects 2003
Summary
This project aims at studying the conditions under which genetic databases can be established, kept, and used in an ethically acceptable way. The technical possibilities for automated analysis of large DNA sample collections and the bio-informatic processing of the resulting data have developed dramatically during the past several years and are constantly being improved. Protecting the data available in such databases has consequently emerged as a highly complex ethical issue in the arena of health policy. The ethical issues become even more acute when genetic data are combined with information on individuals' health, lifestyle or genealogy. The political processes leading up to the establishment of these databases, as well as their particular legal and ethical arrangements, have stirred considerable controversy. Despite the value of directives developed by certain countries and international organisations, no regulatory framework for genetic databases has been developed to date that is global in scope, yet prepared with regional input, and specific enough to provide practical guidance. WHO and the University of Geneva aim to bridge this gap.
The grant provided by the GIAN for this project totals SFr 285,000
Project Team
Prof. Alexandre Mauron , Coordinator, Institute of Biomedical Ethics , Faculty of Medicine , University of Geneva (Unige) .
Dr. Nikola Biller-Andorno , Principal Member, Ethics and Health , World Health Organization (WHO) .
Dr. Andrea Boggio , Principal Member, Institute of Biomedical Ethics , Faculty of Medicine , University of Geneva (Unige) .
Dr. Bernice Elger , Principal Member, Institute of Biomedical Ethics , Faculty of Medicine , University of Geneva (Unige) .
Ms Agomoni Ganguli , Principal Member, University of Zürich (Unizh) .
Dr. Alexander M. Capron , Former Coordinator, Ethics and Health , World Health Organization (WHO) .
Related Links
> Order book , Order book on-line.
Related News
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Genetic Databases: Towards a Global Ethical Framework: Experts' Consultation Meeting - 01.05.06
The World Health Organisation (WHO) and the University of Geneva's Institute of Biomedical Ethics will hold an experts'...
> more
Related Conferences
Genetic Databases: Towards a Global Ethical Framework: Experts' Consultation Meeting - 8 and 9 May 2006
The World Health Organisation (WHO) and the University of Geneva's Institute of Biomedical Ethics will hold an experts'...
> more
Research Output
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Charitable Trusts and Human Research Genetic Databases: The Way Forward?
(available in English only) > more |
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Human Genetic Databases: Towards a Global Ethical Framework
(available in French, English and Spanish) > more |
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Consent and Anonymization in Research Involving Biobanks
(available in English only) > more |
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Human Genetic Databases – Between Global Principles and Local Concerns
(available in English only) > more |
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Comparing Guidelines on Biobanks: Emerging Consensus and Unresolved Controversies
(available in English only) > more |
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Human Genetic Databases: Towards a Global Ethical Framework
(available in English only) > more |
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The Ethics and Regulation of Human Genetic Databases - Global Perspectives
(available in English only) > more |