Ahmed, K, Ahmed, M, Potrata, B et al. (7 more authors) (2015) Patient attitudes towards prenatal diagnostic testing for inherited retinal disease. Prenatal Diagnosis, 35 (9). 913 - 918. ISSN 0197-3851
Abstract
Objective: To explore factors that influence decision-making in relation to prenatal diagnostic testing (PDT) for inherited retinal disease (IRD). Method: Semi-structured interviews were conducted with 50 adults with IRD, selected from a larger sample to provide a diversity of backgrounds and opinions on genetic testing. Interviews were transcribed verbatim and analysed using thematic analysis. Results: Mostly participants supported PDT, believing that it would provide information to help them prepare for and plan the future care of the child and the potential for early access to emerging therapies. Opposition to PDT stemmed from its use to justify termination of pregnancy, with participants feeling that it was not justified as they retained a good quality of life despite their visual impairment. Participants raised concerns about the risk of PDT and the accuracy of the results. However, most suggested that it should be available as an option for others, but for specific reasons and not as a part of routine care. Conclusion: The variation in attitudes towards PDT and uncertainty about the risk and accuracy of results suggest that individuals at risk of having a child with IRD should have access to genetic counselling to support decision making.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2015 John Wiley & Sons, Ltd.This is the peer reviewed version of the following article: Ahmed, K., Ahmed, M., Potrata, B., Willis, T. A., Grant, H. L., Allsop, M. J., Hewison, J., Downey, L., Gale, R., and McKibbin, M. (2015) Patient attitudes towards prenatal diagnostic testing for inherited retinal disease. Prenat Diagn, 35: 913–918., which has been published in final form at http://dx.doi.org/10.1002/pd.4644. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving. |
Keywords: | Prenatal diagnosis; Inherited retinal disease; Attitudes; Genetic testing |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Primary Care (Leeds) The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Centre for Health Services Research (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 03 Jul 2015 14:49 |
Last Modified: | 04 Jul 2016 16:12 |
Published Version: | http://dx.doi.org/10.1002/pd.4644 |
Status: | Published |
Publisher: | Wiley |
Identification Number: | 10.1002/pd.4644 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:87694 |