During the past decade, there have been tremendous advances in molecular technology from the Human Genome programme. This emergence of genetic technology is accompanied by increasing concern regarding the use and misuse of genetic information in society. It is the duty of professionals in the field of human genetics to anticipate the potential applications of their discoveries, to transfer their knowledge as fast as possible when a benefit may by expected for the community, to provide guidelines and recommendations to help less-experienced professionals minimize misuses and misinterpretations.
The overall objective of this special issue of the European Journal of Human Genetics is to disseminate the documents, which were produced as results of working parties, and which tackle four important topics of concern in the field of Human Genetics.
The topics which are addressed are those that impact on professional practice and on the relationship between human geneticists and the public. These are :
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‘Provision of genetic services: current practices and issues’
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‘Genetic screening: technical, social and ethical issues’
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‘Data storage and DNA banking: technical, social and ethical issues’
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‘Genetic tests and Insurance and employement: technical, social and ethical issues’
The documents were produced under the responsibility of the Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics through a formal process including the production of a working document sent to experts from all connected disciplines and from almost all European countries. The documents were then amended according to their comments. A workshop was then organized to discuss in depth the most difficult points raised. A group of about 50 experts selected from the original reviewers was invited for a 2-day meeting, one meeting per topic. Following the workshops the documents were amended once again, then proposed for discussion on the net to the almost 1000 members of the European Society of Human Genetics. In the meantime, the PPPC members drafted recommendations which were also made available on the Society's website, then amended before final adoption by the membership.
The four recommendations are presented at the beginning of this issue. They are followed by the background documents.
It is expected that this issue will provide a sound empirical base upon which to develop consensus policies in the field of human genetics and biotechnology, respecting both the state of the art and the values in different Member states. They are offered to contribute to the debate among the community and to serve as references for policy makers in European countries and at the European Union level.
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Aymé, S. Introduction. Eur J Hum Genet 11 (Suppl 2), S1 (2003). https://doi.org/10.1038/sj.ejhg.5201109
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DOI: https://doi.org/10.1038/sj.ejhg.5201109