By Adeline Perrot and Ruth Horn
The introduction of non-invasive prenatal testing (NIPT) into public health systems in recent years has been the subject of controversy in England, France and Germany. In England, for example, the ‘Don’t Screen Us Out’ campaign recently supported the case of Crowter and Lea-Wilson, challenging the UK Secretary of State for Health and Social Care by denouncing the section 1(1)(d) of the Abortion Act 1967 that makes termination of pregnancy (TOP) lawful for ‘serious’ fetal indication beyond 24 weeks of pregnancy. According to the claimants, the law is discriminatory and devalues disabled people’s lives. This claim was rejected in the High Court judgment of 23 September 2021 and the claimants will be heard before the Court of Appeal.
This challenge took place in the same year that NIPT was implemented in England as part of the NHS Fetal Anomaly Screening Programme (FASP). NIPT has been offered as part of the routine antenatal care pathway in England since July 2021, as a second-tier test for pregnant women with a higher probability (1:2 to 1:150) of having a child with Down’s, Edwards’ or Patau’s syndrome. In our paper, we do not discuss whether or not it is necessary to change the law, and to remove the fetal indication as a medical reason for TOP after 24 weeks. Instead, we analyse differences and similarities in public discourses and public policies around NIPT in England, France and Germany, in order to contextualise the ethical issues associated with the test.
In England, the NHS Fetal Anomaly Screening Programme (FASP) emphasises balanced and accurate information in response to campaigners’ criticism of the risks of selection and increasing numbers of TOPs for fetuses with Down’s Syndrome. Denunciations against screening tests such as NIPT are not new and prenatal screening has been criticised as an instrument of fetal selection since the 1980s by various advocates such as ‘pro-life’ activists, some feminist groups and some Christian circles. These views differ from that of other disability rights groups such as the Down’s Syndrome Association (DSA) who stress that it should be up to women to accept or refuse the offer of screening as long as non-directive counselling is provided.
In England, the reimbursed offer of NIPT is publicly justified as reducing the number of invasive procedures and, therefore, miscarriages. This argument is also used in the German debate that is furthermore reluctant to associate NIPT with any form of a population screening programme. Generally, we observe an effort in Germany to emphasise not only the pregnant woman’s right of self-determination but also the ‘right to life’ of ‘every living human being’ including the fetus. Section 218a of the German Criminal Code provides that TOP is lawful, in certain circumstances, including if there is a medical indication of a danger to the ‘pregnant woman’s physical or mental health’. Fetal indication is not explicitly mentioned as a legal ground for TOP, yet in practice, the medical indication covers the potentially serious effects of a diagnosis of fetal anomaly or malformation on the pregnant woman’s mental health. This contrasts with health policies in France, emphasising the importance of screening programmes to prevent disabilities at birth and, hence, improve the detection rate for trisomy 21 (Down’s syndrome).
For its part, England is more patient-centred and more inclined to defend women’s individual choices. However, concerns have been raised in the public debate regarding routinisation of NIPT and the risk of putting pressure on women to take up testing. To date, there is no empirical evidence of routinisation, and so far studies have shown that women have good knowledge of NIPT in order to make informed choices. Nevertheless, the offer will still need to be improved in clinical settings to ensure that health professionals are regularly trained and provide unbiased pre-/post-test counselling. The roll out of NIPT is currently being evaluated in England and further changes are likely to be made to improve the screening pathway. Prenatal screening is also likely to be impacted by a new Down Syndrome Bill, discussed in the House of Lords on 18 March 2022, which aims to create a new duty for the Secretary of State to meet the specific needs of people with Down Syndrome.
Whatever future changes in prenatal screening policies entail, it is important to ensure that when women make choices about their pregnancy, they are not subject to societal, political, economic or medical pressure. Whether women want or do not want to take up prenatal screening, it is essential that they can decide according to their personal values and preferences. The principle of preserving women’s autonomy and equitable access to testing should be held together with the principle of promoting the rights and inclusion of people with disabilities. We state that both of these principles can be defended without being in opposition.
Authors: Adeline Perrot and Ruth Horn
Affiliations:
AP: Ethox Centre and Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health, University of Oxford; Big Data Institute, Li Ka Shing Centre for Health Information and Discovery
RH: Ethox Centre and Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health, University of Oxford; Big Data Institute, Li Ka Shing Centre for Health Information and Discovery; Ethik der Medizin; Medizinische Fakultät; Universität Augsburg
Competing interests: We have no competing interests to report.