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How harmful is genetic testing for familial adenomatous polyposis (FAP) in young children; the parents’ experience

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Abstract

Predictive genetic testing for familial adenomatous polyposis (FAP) is routinely offered to children at-risk from the age of 10 years onwards. Predictive testing for FAP at a younger age is debatable, because of absence of medical benefits. However, circumstances may arise when testing at a younger age (<10 years) is appropriate. Currently, there is a lack of published experience with predictive testing of children at this young age. We evaluated 13 children who were tested for FAP at the age younger than 10 years; 7 mutation-carriers and 6 non-carriers. Parents of these children were re-contacted and open-ended semi-structured interviewed. None of the contacted parents regretted the timing of genetic testing. The major reasons for testing at the young age were (1) testing of all children in the family at the same moment; (2) certainty for the future; and (3) preparing the child for future surveillance. None of the parents observed changes in mental or physical health in their child after testing. Also, young genetic testing did not lead to colon surveillance before it was indicated. Genetic testing for FAP at a young age is experienced as causing no harm by parents. Future studies should evaluate children’s own experiences with early genetic testing.

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Acknowledgement

This project is funded by Fonds NutsOhra.

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There were no conflicts of interest.

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Authors and Affiliations

  1. Department of Clinical Genetics, Erasmus University Medical Centre Rotterdam, Office Ee2018, PO Box 2040, 3000 CA, Rotterdam, The Netherlands

    Anna A. Kattentidt-Mouravieva, M. den Heijer, I. van Kessel & A. Wagner

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  1. Anna A. Kattentidt-Mouravieva
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  2. M. den Heijer
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  3. I. van Kessel
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  4. A. Wagner
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Correspondence to Anna A. Kattentidt-Mouravieva.

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Kattentidt-Mouravieva, A.A., den Heijer, M., van Kessel, I. et al. How harmful is genetic testing for familial adenomatous polyposis (FAP) in young children; the parents’ experience. Familial Cancer 13, 391–399 (2014). https://doi.org/10.1007/s10689-014-9724-5

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