Abstract
Purpose: Most newborn screening (NBS) strategies for Cystic Fibrosis (CF) also identify carriers. However, it is unclear if parents want to be informed about their child's carrier status or not. Methods: Focus group discussions with pregnant couples to explore their opinions about disclosure of a carrier result for CF of their newborn. Results: All (n = 30) wanted to be informed when newborn screening would show their newborn being a CF-carrier. Their main reason was the implication of this knowledge for further family planning. Other family members could be informed and children within the family could be tested. Parents stated they have the right to know, but others also expressed that the choice of not being informed should be offered as well. Conclusion: Most parents want to be informed when NBS for CF reveals that their child is a CF-carrier, but the choice of not being informed should also be offered.
Original language | English |
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Pages (from-to) | 192-196 |
Journal | European Journal of Medical Genetics |
Volume | 56 |
Issue number | 4 |
DOIs | |
Publication status | Published - Apr 2013 |
Keywords
- Newborn screening
- Cystic fibrosis
- Carrier
- DNA analysis
- Focus group