Newborn screening: Outcomes of mixed blessing
Newborn screening: outcomes of mixed blessing
The screening of newborns in The Netherlands is targeted at identifying the presence of severe, but treatable disorders in infants. In 2007, the Dutch newborn screening program was expanded to include an additional 13 metabolic disorders. New technologies make testing for these rare disorders possible, and probably more disorders will be included in the newborn screening in the near future (technology driven). Unfortunately, in some cases test results are false positive or disclose other disorders than screened for. Ethical considerations on these subjects were hardly addressed.
The project 'Newborn screening: Outcomes of mixed blessing' concentrates on questions that can arise as a consequence of the fact that screening may result in outcomes other than initially intended. What is the effect of a false positive result on the parents? What to do with other results than screened for? Is disclosing carrier ship desirable or not? Main objectives of the project are to assess how often these questions arise in practice and to analyze how parents deal with this type of knowledge. Can they for example understand the concept of a false positive result or will they always keep the fear that their child may be carrying a severe disease? By establishing the impact of this type of 'mixed blessing', the project will generate a better understanding of the benefits and pitfalls of newborn screening.