Local view for "http://purl.org/linkedpolitics/eu/plenary/2009-04-23-Speech-4-094"
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"en.20090423.5.4-094"2
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".
Mr President, Commissioner, helping patients who suffer from rare diseases has long been a major concern of the European Parliament. Patients who suffer from rare diseases – this has been said – need European support. National efforts in this area do not suffice. Because these diseases are so rare, there are not centres and experts for them in every Member State. For research – and this is a very important point – you need a certain number of patients for the disease to be researched at all and for it to be possible to develop new therapies. The same applies to the development of new drugs. Mrs Grossetête talked of the Regulation on orphan medicinal products, which is very important.
The Commission’s initiative, Commissioner, is also very important. We in the Group of the European People’s Party (Christian Democrats) and European Democrats support you wholeheartedly on this and we also support the many improvements that have been made by Mr Trakatellis in this report. I have to say, however, on behalf of my group, that there is one amendment in Mr Trakatellis’s report that goes against this fundamental aim of helping patients.
Amendment 15 talks of how genetic diseases should be avoided and eradicated through measures such as genetic counselling and the selection of embryos. This wording has shocked many people, and not only the ethics experts and the representatives of disabled groups, but scientists, too. The European Society of Human Genetics is calling on us to reject Amendment 15. They are making comparisons with the eugenics of the first half of the last century.
Politics should not exert pressure. Genetic counselling, likewise, should not be dominated by a political goal. We should therefore reject Amendment 15. We should vote in favour of this report – provided that Amendment 15 is rejected – as it is a sound report. Otherwise, it will be highly problematic. We should be helping people with rare diseases, not giving them the feeling that they are actually surplus to requirements."@en1
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