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Non-Invasive Prenatal Testing: UK Genetic Counselors’ Experiences and Perspectives

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

To date, NIPT in the UK has been predominately used in the health service for early sexing of pregnancies at known risk of sex-linked conditions. Developments in the technology are broadening its use to diagnostic testing for paternally inherited genetic conditions and for detection of aneuploidy. This study aimed to examine the experiences of UK genetic counselors with offering NIPT for sexing, and to explore their views on future uses of the technology. Twenty interviews with practicing GC’s from four centres were audiotaped, transcribed, and analyzed using modified grounded theory. Participants all had experience of counseling patients around prenatal diagnosis and 18/20 had experience of offering NIPT. GCs reported initially feeling cautious about offering the test, although they saw it as a positive advance for their patients at genetic risk. Emphasis was placed on accuracy, adequate counseling provision and gatekeeping with concerns expressed about broadening its use in the routine antenatal setting. Findings indicate the genetics model for offering prenatal testing to high risk patients can incorporate NIPT and the profession may have a role in informing its implementation in wider healthcare settings. In a wider context this study highlights the challenges new technologies bring to genetic counselors’ practice and service structure.

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Acknowledgments

The Authors would like to thank all the participants who generously gave up their time for this study and Angela Effa for her contributions.

Conflicts of Interest

Elizabeth S. Alexander, Susan E. Kelly, and Lauren Kerzin-Storrar declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

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Authors and Affiliations

  1. Manchester Centre for Genomic Medicine, Institute of Human Development, University of Manchester and Manchester Academic Health Sciences Centre (MAHSC), Central Manchester University Hospitals NHS Foundation Trust, Level 6, St Marys Hospital, Oxford Road, M13 9WL, Manchester, UK

    Elizabeth Alexander & Lauren Kerzin-Storrar

  2. Department of Sociology, Philosophy and Anthropology, University of Exeter, Exeter, UK

    Susan Kelly

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  1. Elizabeth Alexander
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  2. Susan Kelly
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  3. Lauren Kerzin-Storrar
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Correspondence to Elizabeth Alexander.

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Alexander, E., Kelly, S. & Kerzin-Storrar, L. Non-Invasive Prenatal Testing: UK Genetic Counselors’ Experiences and Perspectives. J Genet Counsel 24, 300–311 (2015). https://doi.org/10.1007/s10897-014-9765-9

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