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Neonatal screening

Total results in % based on votes of 6 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 in this event.

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.

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.