The Don’t Screen Us Out campaign protests the UK government’s proposal to introduce cfDNA screening, which would allow pregnant women to determine with more than 99% accuracy whether their unborn child will have Down’s syndrome. This is projected to result in a significant increase in the number of children with Down’s syndrome ‘screened out’ by abortion. The campaign seeks legislative change by delaying or halting the legislation, and may be described as an “outside track” campaign (Hilder, 2007: 22) as it has sought to involve and mobilise the wider public in order to achieve its aims.
Complex ethical issues surround this campaign. The prevailing view in the UK is that abortion should, in some form, be legal – polls show that only 2-6% of people in Britain oppose abortion in all cases. Currently, 90% of babies prenatally diagnosed with Down’s syndrome are aborted. The introduction of the cfDNA screening is expected to see a further 13% decrease in live births of babies with Down’s syndrome.
Despite the broad consensus on women’s right to choose abortion, cfDNA screening has raised important questions about the ethics of a system which allows for the termination of a pregnancy based on a perceived ‘defect.’ The campaign has described the screening as ‘informal eugenics’: the ‘screening out’ of the Down’s syndrome community before they are born would have a long-term impact on the population of the Down’s syndrome community.
The campaign has received a lot of media coverage after Sally Phillips, a British comedian and mother of a son with Down’s syndrome, made a documentary for BBC2 called A World Without Down’s Syndrome? She argues for improved education about Down’s syndrome, and particularly for a balancing-out of what she perceives as an overly negative discourse surrounding life with Down’s syndrome. As Röttger (2006: 10) has posited, campaigns seek a media – especially mass media – response in order to achieve their goals. Whilst the documentary certainly caught the attention of the media, it is debatable whether this will help them to achieve their goals.
The documentary elicited an enormous response on both sides of the debate. Parents’ support group Antenatal Results and Choices has spoken out saying that it ‘could make the pregnancy dilemma more difficult’, and Hadley Freeman, who frequently writes about women’s issues for The Guardian, says that it wrongfully disputes a woman’s ‘non-negotiable’ right to abortion. On the other hand, the documentary has been praised by ‘pro-life’ groups, as well as many in the Down’s syndrome community.
So where does all this leave the campaign? Analysis has shown an increase in the role of celebrities in testimonials and as promoters of protest issues (Fahlenbrach, 2002), which, coupled with an effective media campaigns, can increase visibility and mobilise support (Hilder, 2007: 52). The endorsement of a celebrity – Sally Phillips – has undeniably raised the profile of a campaign which might not otherwise have had significant resonance beyond those directly affected by the issue. But is this attention positive? As cited above, much of the media coverage has reprimanded Phillips for seeming to further complicate an already complicated issue – which was not, presumably, her intention or that of the wider campaign.
Whilst this particular campaign may end when a decision is made concerning the cfDNA screening legislation, debates and campaigns around the ethical issues it raises surely will not. As advances in medicine and genetics continue to take strides, there will be new questions to be asked and campaigns to be fought.
Fahlenbrach, K. (2002) Protest-Inszenierungen. Visuelle Kommunikation und kollektive Identitäten in Protestbewegungen, Wiesbaden: Westdeutscher Verlag.
Hilder, P., Caulier-Grice, J. and Lalor, K. (2007). Contentious Citizens–Civil society’s role in campaigning for social change. Young Foundation.
Röttger, U. (2006) Campaigns (f)or a Better World?, in U. Röttger (ed.) PR- Kampagnen. Über die Inszenierung von Öffentlichkeit, Wiesbaden: VS Verlag für Sozialwissenschaften, 9-26.