Community Research and Development Information Service - CORDIS


Ethical, legal and social aspects of genetic testing: Research, development and clinical applications

Funded under: FP6-SOCIETY


Genetic testing is becoming an integral and growing part of healthcare provision and services. In order to ensure the benefit of this innovation for individuals and society at large it is important to implement human medical genetic testing within an adequate framework of accompanying measures and activities. Trust and confidence should prevail when developing new genetic testing capacities. To help decision-makers at all levels to discuss and formulate this framework, the European Commission�s Research Directorate-General invited a group of independent high-level experts from various backgrounds to discuss the ethical, social and legal implications of genetic testing and to propose relevant and necessary actions to safeguard the success of this new opportunity.
The Commission�s aim was to create a broad European platform for stakeholder dialogue on genetic testing. The Group limited its discussion to issues and perceptions surrounding the application of genetic testing in health research, healthcare and related activities. The Group now submits its consensus report along with 25 recommendations. These documents were used as the basis for discussion at a European Citizen and Stakeholders Conference in Brussels on 6 and 7 May 2004.
The report�s first two chapters summarise the main points of the state of the art, the views of the various stakeholders, and public perceptions. Chapters 3 to 5 report the current views and the positions of the Group on the specific topics that were discussed - public dialogue, the position of genetic data among all medical information, issues related to gender and ethnicity, �biobanks� as research tools, and the development of pharmacogenetics. Chapters 6 to 8 address research and development of genetic tests, their clinical implementation and use, and the impact of medical genetic testing on healthcare systems. They underline the challenges, needs and duties of test developers, public health authorities, clinicians and genetic counse

Additional information

Authors: MCNALLY E, European Parliament, Brussels (BE);CAMBON-THOMSEN A, European Parliament, Brussels (BE)
Bibliographic Reference: EUR 21421123 EN (2004), 93 pp. Free of charge
Availability: EUR-OP reference: KI-NA-21123-EN-C Available from: Documentation Service of DG Research Fax: +32 2 295 8220 E-mail:
ISBN: ISBN: 92-894-7324-X
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