Article Text

Download PDFPDF
Unconditional access to non-invasive prenatal testing (NIPT) for adult-onset conditions: a defence
  1. India R Marks1,
  2. Catherine Mills2,
  3. Katrien Devolder3
  1. 1Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Victoria, Australia
  2. 2Monash Bioethics Centre, Monash University, Clayton, Victoria, Australia
  3. 3The Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK
  1. Correspondence to Dr India R Marks, Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, VIC 3800, Australia; india.marks98{at}gmail.com

Abstract

Over the past decade, non-invasive prenatal testing (NIPT) has been adopted into routine obstetric care to screen for fetal sex, trisomies 21, 18 and 13, sex chromosome aneuploidies and fetal sex determination. It is predicted that the scope of NIPT will be expanded in the future, including screening for adult-onset conditions (AOCs). Some ethicists have proposed that using NIPT to detect severe autosomal AOCs that cannot be prevented or treated, such as Huntington’s disease, should only be offered to prospective parents who intend to terminate a pregnancy in the case of a positive result. We refer to this as the ‘conditional access model’ (CAM) for NIPT. We argue against CAM for NIPT to screen for Huntington’s disease or any other AOC. Next, we present results from a study we conducted in Australia that explored NIPT users’ attitudes regarding CAM in the context of NIPT for AOCs. We found that, despite overall support for NIPT for AOCs, most participants were not in favour of CAM for both preventable and non-preventable AOCs. Our findings are discussed in relation to our initial theoretical ethical theory and with other comparable empirical studies. We conclude that an ‘unconditional access model’ (UAM), which provides unrestricted access to NIPT for AOCs, is a morally preferable alternative that avoids both CAM’s fundamental practical limitations and the limitations it places on parents’ reproductive autonomy.

  • prenatal diagnosis
  • ethics- medical
  • fetus
  • reproductive medicine

Data availability statement

Data are available upon request.

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Data availability statement

Data are available upon request.

View Full Text

Footnotes

  • Contributors All authors contributed to this work. IM, CM and CD conceptualised and implemented the study. Analyses were undertaked and finalised by IM. Drafting of the manuscript was undertaken by IM. Review and editing were completed by all authors. IM is the author acting as the guarantor for this work.

  • Funding This study was supported by Australian Research Council (LP190100841).

  • Competing interests CM has received funding from the Australian Research Council for the project LP190100841, which includes partnership funding from Illumina and Victorian Clinical Genetic Services. Funding from Illumina is a potential conflict of interest.

  • Provenance and peer review Not commissioned; externally peer reviewed.

Other content recommended for you