Neonatal screening
Total results in % based on votes of 254 people
| Policy | |
|---|---|
1 | National health care systems can decide on providing national neonatal screening for diseases that are treatable or not and can decide on access to genetic data with no need for approval from the EU or other independent body. |
2 | National health care systems to decide for which diseases to provide neonatal screening but an independent European body will coordinate and advise on what national neonatal screening should be in place and according to which code of practice. |
3 | European legislation to ensure harmonised neonatal screening for severe, treatable, genetic diseases or when medical utility has been demonstrated. Special authorisation to be obtained from an independent European organisation for untreatable diseases. Genetic data to be protected by a national independent body. |
4 | Authorisation, monitoring, and evaluation of neonatal screening programmes on European level. An independent European organisation to record tests carried out, and to protect genetic data. |
Overview of the new policies developed by players.
National health care systems can decide on providing national neonatal screening for diseases that are treatable. An independent European body will coordinate and advise on what national neonatal screening should be in place and according to which code of practice. European legislation is needed to ensure and control the harmonization of the neonatal screening.
Hungary, 02/07/2010
Policy three but add that the independant body should include patient representatives.
Netherlands, 13/05/2011
Neonatal screening programes should remain a national competence. There are benefits in sharing info, extertise and contacts + cataloguing at the Euro level. Such networks supported at the European level should not be implemented in isolation. They should include a commitment to building experience & supporting structure (centres of expertise & cross border)
Netherlands, 14/05/2011
Stan zdrowia, choroby rzadkie, genetyczne oraz przewlekłe nie powinny stanowić przyczyny dyskryminacji w żadnym aspekcie życia w całej Unii Europejskiej..Pracodawcy nie powinni mieć prawa do zadawania pytań dotyczących tych chorób. Ubezpieczyciele powinny ekstrapolować ryzyko wystąpienia chorób genetycznych, rzadkich i innych na całą populację, tak aby ryzyko rozkładało się równomiernie na wszystkich pacjentów. Health condition, rare diseases and genetics and should not be a chronic cause of discrimination in any aspect of life throughout the European Union .. Employers should not be allowed to ask questions related to these diseases. Insurers should extrapolate the risk of genetic diseases, rare and others on the entire population, so that the risk and cost fall evenly on all patients.
Poland, 27/07/2011
EU should be responsible for the authorization, monitoring and evaluation of neonatal screening. Furthermore, it should establish an agency for this topic, funded by the EU. It is important to take into account that there are diseases, such as Congenital Defects of Glycosilation, formed by 45 different types, in which 2 have a treatment although they are not included in the neonatal screening because there are not enough cases diagnosed. We fully support, that research should be done in Hospitals in order to increase the number of diagnosed patients around the world. In addition, EU should consider to create a list with potential diseases for the near future to be included in the neonatal screening. Finally, it is important to support research programs in this area in order to expand the number of diseases that can be detected through neonatal screening.
Portugal, 05/07/2011
La Législation européenne devra garantir un dépistage néonatal harmonisé de l'ensemble des maladies génétiques. Les données génétiques seront gérées par un organisme européen indépendant (idem pour l'enregistrement des tests)
France, 16/12/2011
Stanowisko 5 (nowa polityka uzgodniona przez uczestników dyskusji) Na bazie centralnego europejskiego rejestru chorób powinny zostać ustalone standardy obowiązkowych badań przesiewowych dla noworodków we wszystkich krajach członkowskich. Badania takie powinny być przeprowadzone zaraz po urodzeniu oraz po pewnym czasie w przypadku zauważonego, odbiegającego od normy rozwoju dziecka. Ponadstandardowe koszty takich badań powinny być pokrywane przez kraje członkowskie. Position 5 (New policy agreed by the participants of the discussion) In the case of diseases, the central European register should have mandatory standards for newborn screening in all member countries. Such studies should be performed immediately after birth and after some time if in the case of abnormal development of the child. Above standard costs of such testing shall be borne by the member countries.
Poland, 27/07/2011
La Législation européenne devra garantir un dépistage néonatal harmonisé des maladies génétiques rares pouvant être soignées ou dans le cas où l'utilité médicale a été démontrée. Une autorisation devra être obtenue aurpès d'une organisation européenne indépendante pour les maladies incurables. Un organisem européen indépendant devra enregistrer les tests effetcués et protéger les données génétiques
France, 16/12/2011
Hungary, 02/07/2010
Policy three but add that the independant body should include patient representatives.
Netherlands, 13/05/2011
Neonatal screening programes should remain a national competence. There are benefits in sharing info, extertise and contacts + cataloguing at the Euro level. Such networks supported at the European level should not be implemented in isolation. They should include a commitment to building experience & supporting structure (centres of expertise & cross border)
Netherlands, 14/05/2011
Stan zdrowia, choroby rzadkie, genetyczne oraz przewlekłe nie powinny stanowić przyczyny dyskryminacji w żadnym aspekcie życia w całej Unii Europejskiej..Pracodawcy nie powinni mieć prawa do zadawania pytań dotyczących tych chorób. Ubezpieczyciele powinny ekstrapolować ryzyko wystąpienia chorób genetycznych, rzadkich i innych na całą populację, tak aby ryzyko rozkładało się równomiernie na wszystkich pacjentów. Health condition, rare diseases and genetics and should not be a chronic cause of discrimination in any aspect of life throughout the European Union .. Employers should not be allowed to ask questions related to these diseases. Insurers should extrapolate the risk of genetic diseases, rare and others on the entire population, so that the risk and cost fall evenly on all patients.
Poland, 27/07/2011
EU should be responsible for the authorization, monitoring and evaluation of neonatal screening. Furthermore, it should establish an agency for this topic, funded by the EU. It is important to take into account that there are diseases, such as Congenital Defects of Glycosilation, formed by 45 different types, in which 2 have a treatment although they are not included in the neonatal screening because there are not enough cases diagnosed. We fully support, that research should be done in Hospitals in order to increase the number of diagnosed patients around the world. In addition, EU should consider to create a list with potential diseases for the near future to be included in the neonatal screening. Finally, it is important to support research programs in this area in order to expand the number of diseases that can be detected through neonatal screening.
Portugal, 05/07/2011
La Législation européenne devra garantir un dépistage néonatal harmonisé de l'ensemble des maladies génétiques. Les données génétiques seront gérées par un organisme européen indépendant (idem pour l'enregistrement des tests)
France, 16/12/2011
Stanowisko 5 (nowa polityka uzgodniona przez uczestników dyskusji) Na bazie centralnego europejskiego rejestru chorób powinny zostać ustalone standardy obowiązkowych badań przesiewowych dla noworodków we wszystkich krajach członkowskich. Badania takie powinny być przeprowadzone zaraz po urodzeniu oraz po pewnym czasie w przypadku zauważonego, odbiegającego od normy rozwoju dziecka. Ponadstandardowe koszty takich badań powinny być pokrywane przez kraje członkowskie. Position 5 (New policy agreed by the participants of the discussion) In the case of diseases, the central European register should have mandatory standards for newborn screening in all member countries. Such studies should be performed immediately after birth and after some time if in the case of abnormal development of the child. Above standard costs of such testing shall be borne by the member countries.
Poland, 27/07/2011
La Législation européenne devra garantir un dépistage néonatal harmonisé des maladies génétiques rares pouvant être soignées ou dans le cas où l'utilité médicale a été démontrée. Une autorisation devra être obtenue aurpès d'une organisation européenne indépendante pour les maladies incurables. Un organisem européen indépendant devra enregistrer les tests effetcués et protéger les données génétiques
France, 16/12/2011
FUND is a project funded by the European Commission (