Position Paper / European Policy
CF
Statement to European Parliament, Temp Cttee on Human Genetics Cystic Fibrosis is the most common inherited life threatening disorder, caused by a defect in one single gene. Although advances in disease management have improved significantly during the past 30 years the life expectancy of CF-patient is reduced – CF children and adults still die prematurely from Cystic Fibrosis.
Before introduction of
prenatal diagnosis, 83% of the Danish CF families stopped reproduction after the diagnosis
of a child with cystic fibrosis. CONCLUSION: Introduction of prenatal diagnosis permitted at-risk families to have more children without the disease. However, responsiblity for making an informed choice should be theirs alone without any coercion whatsoever.
In June 1990 a pilot project was launched in Denmark. 7.400 pregnant women without known risk for CF were offered a carrier test for CF. Of these women, 6.599 (90%) requested testing for cystic fibrosis. 3 couples were found to be at risk of having a child with CF. After genetic councelling all 3 couples requested prenatal diagnosis. One foetus was diagnosed with CF and the couple chose to terminate the pregnancy. The impact of carrier screening was assessed in terms of anxiety, perception of health, reproductive decisions, etc. in a study: “Psychological and social impact of carrier screening for cystic fibrosis among pregnant women – a pilot study”. Hans Clausen et al. Clinical Genetics 1996 (copy of article enclosed). Important results of the study were that perception of future health among the tested women did not change. Only 1% of the women tested negative regretted being tested, whilst 92% did not regret the test. CONCLUSION: Screening for a life threatening disorder like CF is welcomed, used and well accepted among the Danish population without known risk for CF.
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