Article Text

PDF
Paper
Ethics of routine: a critical analysis of the concept of ‘routinisation’ in prenatal screening
  1. Adriana Kater-Kuipers1,
  2. Inez D de Beaufort1,
  3. Robert-Jan H Galjaard2,
  4. Eline M Bunnik1
  1. 1Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, The Netherlands
  2. 2Department of Clinical Genetics, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, The Netherlands
  1. Correspondence to Eline M Bunnik, Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Centre Rotterdam, Rotterdam 3015 CN, The Netherlands; e.bunnik{at}erasmusmc.nl

Abstract

In the debate surrounding the introduction of non-invasive prenatal testing (NIPT) in prenatal screening programmes, the concept of routinisation is often used to refer to concerns and potential negative consequences of the test. A literature analysis shows that routinisation has many different meanings, which can be distinguished in three major versions of the concept. Each of these versions comprises several inter-related fears and concerns regarding prenatal screening and particularly regarding NIPT in three areas: (1) informed choice, (2) freedom to choose and (3) consequences for people with a disability. Three of the strongest arguments raised under the flag of routinisation are assessed for their validity: the threat that NIPT poses to informed choice, the potential increase in uptake of first-trimester prenatal screening and its consequences for social pressure to participate in screening or terminate affected pregnancies, and the negative consequences for disabled people. These routinisation arguments lack empirical or normative ground. However, the results of this analysis do not imply that no attention should be paid to possible problems surrounding the introduction of NIPT. At least two problems remain and should be addressed: there should be an ongoing debate about the requirements of informed choice, particularly related to an expanded scope of prenatal screening. Also, reproductive autonomy can only be achieved when expecting parents’ options are variegated, real and valuable, so that they can continue to choose whether or not to screen or to terminate a pregnancy.

  • ethics
  • informed consent
  • reproductive medicine
  • autonomy
  • genetic screening/testing

Statistics from Altmetric.com

Footnotes

  • R-JHG and EMB contributed equally.

  • Contributors AKK and EMB designed the study. AKK conducted the literature study. AKK and EMB drafted the manuscript. IDB and R-JHG critically revised the manuscript for important intellectual content. All authors have read and approved the final manuscript.

  • Funding This study is a result of a research project ‘Towards an ethically robust scope of NIPT’ which was funded by ZonMw, project number 731010019.

  • Competing interests None declared.

  • Patient consent Not required.

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

  • Data sharing statement No additional data available.

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.