Amy Redhead discusses the ethical necessity of involving people with Down’s Syndrome (DS) in discussions of, and debates around, selective abortion (SA).
Bioethical debates surrounding Down’s syndrome (trisomy 21) have taken up space in medical, political, legal, philosophical and cultural discourses since the end of the twentieth century, when the first prenatal diagnosis of Down’s syndrome (DS) was made (Boyd et al. 2012). Debates around the morality of the selective abortion [i] of foetuses that test positively for DS have been ongoing since the first ‘therapeutic abortion’ was carried out in 1968 (Valenti et al. 1968, 220). Genetic technologies have advanced exponentially since the 1960s and are now more accurate than ever. Take, for example, the recent development of non-invasive prenatal testing (NIPT) – a simple blood test that can now inform prospective parents that their unborn child is likely to have DS with 91% accuracy (NHS 2021).
A typical pregnancy journey (in the UK) involves a combined screening test at 10 to 14 weeks gestation – combined with an ultrasound and blood test. Upon receipt of a ‘higher chance’ result (meaning there is a 1 in 150 chance that the foetus has DS), women are given three options (NHS, 2021):
1) not to have any further testing.
2) undergo a second screening test (NIPT) [ii] which provides a more accurate result.
3) undergo a diagnostics test (usually amniocentesis) [iii] to find out for certain if the foetus has DS.
Prospective parents who receive a prenatal diagnosis of Down’s syndrome must decide whether to continue with or terminate the pregnancy. Under UK law, babies prenatally diagnosed with DS can be aborted up until full gestation, whereas for a healthy foetus, the cut-off point for termination is 24 weeks (Abortion Act 1967).
Inclusion or illusion?
We live in a world where “difference” is, on the surface, embraced. We now watch actors with Down’s syndrome in films and on television (The Peanut Butter Falcon; Line of Duty; Ralph and Katie), and billboards and magazines project images of fashion models with DS who are the faces of high-end fashion lines (Gucci; River Island). We even witness activists with DS in governmental debates over discriminatory abortion laws (Heidi Crowter on behalf of Don’t Screen Us Out). However, at a time when life prospects for people with DS have never been better, termination rates are increasing. Selective abortion (SA) is the typical response to ‘foetal deviation’ in England and Wales. In the case of DS, 90% of pregnancies with a prenatal diagnosis are terminated (Thomas 2017). The most recent statistics from the Department of Health and Social Care tell us that in 2021, 859 babies prenatally diagnosed with DS were aborted in England and Wales (Office for Health Improvement & Disparities 2021). This figure has increased from 2020 by 23.95%. In addition, the statistics showed a 71.43% increase in abortions performed after 24 weeks (Office for Health Improvement & Disparities 2021). Why, in a seemingly progressive society, are termination rates for DS so high?
Within the bioethics community, the danger of using prenatal technologies and selective abortion (SA) based on foetal sex characteristics has been widely recognised and disputed. Fewer reservations have been made regarding SA on the basis of disability (Asch 1999). UK law prohibits SA on the basis of sex, whereas pregnant women are well within their legal rights to terminate a pregnancy that is potentially ‘severely handicapped’ up until birth (Abortion Act, 1967).
The social value of disabled lives is brought into question before birth through genetic screening and diagnosis.
Pro-choice vs disability-rights perspectives
Debates put forward by reproductive rights advocates argue that a mother’s right to reproductive freedom relies on access to prenatal screening and selective abortion (SA) at any stage. On the other side, disability rights activists highlight the discriminatory nature of SA. Marsha Saxton describes the dispute aptly, stating:
‘The reproductive rights movement emphasizes the right to have an abortion; the disability rights movement, the right not to have an abortion’ (1998, 375, original emphasis).
Alison Piepmeier (2013) addresses the rift between reproductive rights and disability rights, stating that feminist strategies that support SA often manipulate and stereotype critical public dialogues concerning reproduction. ‘Choice’ is often cited as a reproductive right, but in terms of SA and disability, choice is not strictly individualised – choice is informed by broader social contexts that ‘shape reproduction, parenting, and our understanding of [disabled] children’ (Piepmeier 2013, 161). Pregnant women are ‘making a decision that’s far more complex than the rhetoric of “choice” suggests’ (Piepmeier 2013, 176).
Tensions between the feminist pro-choice perspective and the disability rights-based perspective are difficult to navigate, especially when one agrees with both standpoints, a position I find myself in. Piepmeier (2013, 176) calls for a coming together of reproductive and disability rights advocates, following what she calls a ‘reproductive justice approach’. Reproductive justice is an academic and activist model that prompts and proliferates conversations around reproduction, demanding an understanding of how stigmas and stereotypes are constructed and how these narratives shape reproductive decision-making (Piepmeier 2013, 176). In the broadest sense, reproductive justice ‘acknowledges the complexity of reproduction’ and does not claim to provide a one-size-fits-all solution (Piepmeier 2013, 176).
No ‘moral status’, no voice
Assumptions around poor quality of life are central to justifications for selective abortion. The moral and social worth of disabled people- and doubts over whether disabled people can have a ‘good human life’- has taken up space in bioethics since the development of genetic testing and technologies (Schmitz 2014, 51). One of the crucial questions being pondered by bioethicists is whether cognitively disabled humans (including those living with Down’s syndrome) have the same moral status as other human beings (Schmitz 2014). Societal attitudes towards people living with learning disabilities/cognitive impairments rely on how this question is answered – but they also influence decision-making in both the political and bioethical spheres (Schmitz 2014, 51).
But where do people living with cognitive impairments fit into these ethical debates? How are they involved? My research illustrates that the very people whose existence is being debated are not included in the discussion, especially in academia. Research with, and not simply about, people with learning disabilities is rare. The narratives of others (family members, carers, teachers) are often relied upon, rather than speaking with the ‘subjects’ of research themselves. There is an assumption that people with a learning disability do not possess the capacity to become involved in academic research. Their presumed “vulnerability” means that, more often than not, they are exempt from these discussions. I, however, argue that neglecting the narratives of those whose existence is being threatened is unethical.
A way forward?
My research involved working with a group of co-researchers with DS. Together we analysed different documentary films and TV series about DS, and co-produced a mock trailer for a documentary film based on how the co-researchers wanted to be represented. The sessions covered prenatal screening, although the theme of selective abortion was clearly something I needed to approach with utmost care and sensitivity. There was the potential for difficult conversations around upsetting topics, and I was not sure of the co-researchers’ prior knowledge regarding prenatal screening and DS. The co-researchers were regularly reminded that they did not have to participate in any discussions in which they might be uncomfortable. We used various communication tools, visual information, and examples from the co-researchers’ favourite soap opera (Emmerdale) to have a thought-provoking and fruitful conversation about DS, prenatal screening, and selective abortion.
When discussing prenatal screening with co-researchers, they reacted positively to babies with DS, confirming that if they could choose what baby to have, they would prefer a baby with DS. Before our discussion around selective abortion had begun, the co-researchers expressed their sense of self-worth. I interpreted what they said as meaning they see the value in a baby with DS because they value their own lives.
Further discussions with co-researchers highlighted that some people with DS are so isolated from bioethical debates on this topic that they were not even aware that selective abortion on the basis of disability existed. I contend that it should be the majority, rather than the minority, of people with DS who are given the opportunity to learn about reproductive technologies and laws, and that people with DS should have the space and the platform to engage with this topic or protest if so inclined. At the very least, people with DS should have a forum in which they can question or problematise SA and late-term abortion laws.
The work I have collaboratively carried out with co-researchers serves as an example of how we can pay attention to the voices of people with DS when it comes to critical debates around selective abortion. Bioethical debates about reproductive technologies and SA require the involvement of those whose lives are being targeted, not merely as a tokenistic gesture or to tick inclusion boxes but because, frankly, it is unethical to do otherwise.
[i] The term “selective abortion”, as it is being used in this essay, refers to the termination of a pregnancy on the ground of disability.
[ii] An NIPT involves examining small fragments of DNA (cell-free DNA (cfDNA) which are released from the placenta. A blood sample from the mother is tested to determine if there is a chance that the baby is affected by Down’s, Edwards’ or Patau’s Syndromes.
[iii] This is when a long, thin needle is inserted through a mother’s abdominal wall, guided by an ultrasound image. The needle is passed into the amniotic sac that surrounds the foetus, and a small sample of amniotic fluid is removed for analysis.
About the Author: Amy is an ESRC-funded PhD student at the University of Leeds, and her research interests include cultural representations of disability, language and discourse and disability equality.
References
Abortion Act. 1967. (c.1). Accessed March 25, 2020. http://www.legislation.gov.uk/ukpga/1967/87.
Asch, Adrienne. 1999. “Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy”. American Journal of Public Health 89 (11): 1649-1657. PubMed Central.
Boyd, P., Chamberlain, P., Wellesley, D. and Kurinczuk, J. 2012. “The Evolution of Prenatal Screening and Diagnosis and Its Impact on an Unselected Population over an 18-Year Period”. BJOG: An International Journal of Obstetrics & Gynaecology, 119 (9): 1131-1140. Wiley Online Library.
NHS. 2021. “Screening for Down’s syndrome, Edward’s syndrome and Patau’s syndrome”. Accessed May 22, 2023. https://www.nhs.uk/pregnancy/your-pregnancy-care/screening-for-downs-edwards-pataus-syndrome/.
Office for Health Improvement & Disparities. 2021. “Abortion Statistics, England and Wales. 2021”. Accessed April 25, 2023. https://www.gov.uk/government/statistics/abortion-statistics-for-england-and-wales-2021/abortion-statistics-england-and-wales-2021#key-events.
Piepmeier, Alison. 2013. “The Inadequacy of “Choice”: Disability and What’s Wrong with Feminist Framings of Reproduction”. Feminist Studies 39 (1): 159-186. Gale Literature Resource Center.
Saxton, Marsha. 1998. “Disability Rights and Selective Abortion”. In Abortion Wars: A Half Century Struggle, 1950-2000, edited by Rickie Solinger, 375-389. Berkley: University of California Press.Thomas, Gareth. 2017. Down’s Syndrome Screening and Reproductive Politics : Care, Choice, and Disability in the Prenatal Clinic. London: Routledge.
Schmitz, Barbara. 2014. ““Something Else”? – Cognitive Disability and the Human Form of Life”. In Disability and the Good Human Life, edited by Jerome Edmund Bickenbach, Franziska Felder and Barbara Schmitz, 50-71. Cambridge: Cambridge University Press.
Valenti, C., Schutta, E. J. and Kehaty, T. 1968. “Prenatal Diagnosis of Down’s Syndrome”. The Lancet 2 (0): 220-221.
Elsevier ScienceDirect Journals.
