Abstract
To investigate if actual knowledge of Down syndrome (DS), influences the decision to accept or decline prenatal diagnosis (PND). Secondary aims were to elucidate reasons for accepting or declining PND and investigate differences between the accepting and declining group in perceived information, knowing someone with DS and thoughts about decision-making. A questionnaire was completed by 76 pregnant women who underwent invasive testing and 65 women who declined tests for chromosomal aberrations in Uppsala, Sweden. Apart from one question no significant differences were found in knowledge of DS between women declining or accepting PND for DS. Both groups had varying and in several respects low levels of knowledge about DS and its consequences. Most common reasons to accept PND were ‘to ease my worries’ and ‘to do all possible tests to make sure the baby is healthy’. Corresponding statements declining PND were ‘termination of pregnancy is not an option’ and ‘because invasive tests increase the risk of miscarriage’. More women declining PND knew someone with DS. Knowledge of DS at these levels is not a major factor when women decide to accept or decline PND for DS. Their choice is mostly based on opinions and moral values.
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Acknowledgments
The authors would like to acknowledge the support from the midwives at the Fetal Medicine Unit at Uppsala University Hospital who helped to recruit expectant women for the study. We would also like to thank all participants for their contribution. Financial support was received from Allmänna BB:s minnesfond and Uppsala University.
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The present study has been approved by the Regional Research Ethics board in Uppsala (2010/403) and was performed in accordance with the ethical standards as laid down in the 1975 Declaration of Helsinki (revised 2000). Informed consent was obtained from all individual participants included in the study. The study was financially supported by funds from Allmänna BB:s minnesfond and Uppsala University. The funders were not involved in study design, data collection, data analysis, manuscript preparation, or publication decisions. The authors declare no conflict of financial or non-financial interest.
Ethical approval
The present study has been approved by the Regional Research Ethics board in Uppsala #2010/403. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1975 Helsinki declaration (revised 2000). Informed consent was obtained from all individual participants included in this study.
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The authors declare that they have no conflicts of interest.
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This study was financially supported by Allmänna BB:s minnesfond and by funds from Uppsala University. The funders were not involved in study design, data collection, data analysis, manuscript preparation, or publication decisions.
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Ternby, E., Axelsson, O., Annerén, G. et al. Why do pregnant women accept or decline prenatal diagnosis for Down syndrome?. J Community Genet 7, 237–242 (2016). https://doi.org/10.1007/s12687-016-0272-6
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DOI: https://doi.org/10.1007/s12687-016-0272-6