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European action in the field of rare diseases
23 April 2009
On 23 April the European Parliament is due to debate a proposal for a Council recommendation on a European action in the field of rare diseases.
Because the wording of a suggested amendment to the proposed recommendation could be interpreted as promoting the eradication of genetic disease through directive genetic counselling and the use of preimplantation genetic diagnosis, the HGC’s Chair, Professor Montgomery, took the unusual step of writing to all UK MEPs ahead of the vote to draw their attention to accepted practice in genetic counselling and the HGC’s previous advice in Making Babies and elsewhere.
The letter emphasises the Commission’s previous relevant advice on the importance of non-directiveness in genetic counselling, respect for the reproductive autonomy of individuals and for the welfare of children who may be born, and respect for the dignity of people affected by genetic conditions.
The letter can be read here.
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