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P3-67 Patient and professional experiences with non-invasive prenatal diagnosis (NIPD) and testing (NIPT): social and ethical issues raised

Strange, Heather 2015. P3-67 Patient and professional experiences with non-invasive prenatal diagnosis (NIPD) and testing (NIPT): social and ethical issues raised. Presented at: ISPD 19th International Conference on Prenatal Diagnosis and Therapy, Washington, DC, USA, 12–15 July 2015. , vol. S1. Prenatal Diagnosis, p. 109. 10.1002/pd.4617

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Abstract

Objectives: The aim of this study is to gain a rich understanding of early experiences with emerging non-invasive prenatal diagnosis (NIPD) and non-invasive prenatal testing (NIPT) testing technologies. The study aims to identify issues of common interest and concern to both patients and professionals located in a wide variety of settings. Methods: This qualitative PhD study is based on data gathered through a total of forty-three in-depth (narrative) interviews with patients and professionals in the UK. Twenty-three experts with direct professional experience of NIPD or NIPT (including scientists, fetal medicine consultants, policy makers and genetic counsellors) were interviewed, along with ten patients with direct experience of NIPD or NIPT, and ten parents with more general experience of prenatal screening or diagnosis. Clinicians involved in both the NHS-based provision of NIPD and the private provision of NIPT participated in the study. The interviews yielded a rich and diverse dataset, and were analysed for crosscutting themes. Results: A number of core themes were identified as being of significance across the data set. These included: test accuracy; the boundary between NIPD and NIPT; the boundary between ‘high risk’ and ‘low risk’ populations; hopes around NIPT as a possible replacement technology; anxieties around the possible routinisation of selective termination; tensions between the aims of public health screening programmes and individualised care. Conclusions: The rapid development of NIPD and NIPT has very quickly given rise to a diverse and rich set of patient and professional experiences. The issues of interest and concern identified within patient and professional accounts of this new testing technology present a complex ethical, legal, political and social landscape. Knowledge of these early experiences with NIPD and NIPT may enable a better understanding of the advantages these tests may offer, as well as practical and ethical problems that are likely to arise in future, as both NIPD and NIPT become further embedded in specialist clinical practice and routine prenatal care.

Item Type: Conference or Workshop Item (Poster)
Date Type: Publication
Status: Published
Schools: Centre for Economic and Social Aspects of Genomics (CESAGen)
Social Sciences (Includes Criminology and Education)
Subjects: H Social Sciences > H Social Sciences (General)
H Social Sciences > HQ The family. Marriage. Woman
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
R Medicine > RG Gynecology and obstetrics
Publisher: Prenatal Diagnosis
Funders: National Institute for Social Care and Health Research (NISCHR)
Last Modified: 17 Jun 2017 11:22
URI: http://orca.cf.ac.uk/id/eprint/87405

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