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.

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Image from dontscreenusout.org

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.

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Image from http://www.citizenego.org

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.

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5 thoughts on “#DontScreenUsOut

  1. I agree with Gina’s conclusion – there will be further debates and campaigns adressing ethical questions surrounding abortion of children with the Down’s Syndrom and abortion in general. Abortion is and always will be an up to date and delicate topic raising questions which in the end lead us to those fundamental questions on the meaning and origin of human life. People and groups takeing part in this debate, like those mentioned above, bring along various religious and ethical believes and they have different societal and personal backgrounds. The search for a categorical answer of “wright or wrong” or consensus in these debate generates a broad area of tension. However, I think this tension and further debates are absolutely important, so we keep asking these important questions mentiond before.
    Pesonally, I would not argue for the abortion of childern with Down’s Syndrom. On one hand, because I do not have the right to undervalue the life of a child with Down’s Syndrom in comparison to the life of a “normal ” human being. On the other hand, I think disabled people are essential for society to remind us of our humanity and brotherly love in everyday life.

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  2. I think your blog raises some really interesting and controversial moral questions, which interestingly have been split down both sides of the debate. In a way, I feel like the campaign is against the progression of medicine which would further the choice and knowledge offered to women during their pregnancy. I would agree with Hadley Freeman here that it is a positive thing that women will be able have these kinds of checks which have now been developed to be non-invasive and with no threat to miscarriage- however, it is still a woman’s choice whether they have these checks in the first place. I would be interested to see whether the 10% of women who currently keep their babies in the knowledge they will have Down’s Syndrome would drop at all if this new method of screening is introduced. 10% of women, out off all the women who give birth every minute of everyday in the UK, is relatively low – so it is clear the overwhelmingly majority of women choose to abort the fetus once they find this news. Many women may already know, or had already had the conversation with their partner about what they would do in x scenario, but now, they would be safe in the knowledge that the test would not be causing further harm to the baby, regardless of the result. I agree that disabled people are an important part of our society, and we should in no way encourage women to abort their baby if they have Down’s- but we should also not be denying women of the information and knowledge that is rightfully theirs to make decisions about their own future. It all begs the question, is this a progressive social change campaign, or just yet another section of society trying to dictate to women which rights they have over their own bodies?

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    1. I totally agree with the questions you raise, and that’s actually why I chose this issue: because I think I don’t think it’s a straight forward campaign of ‘right’ or ‘wrong’, and I think many people who consider themselves progressive would find it difficult to know exactly where they stand on this issue. Thanks for commenting 🙂

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  3. Ufff! This is a hard one. Great post! I like to think the first ethical guideline for all campaigners is to listen, represent and involve the people impacted by the issue or injustice. But with this campaign, as you point out there is no right or wrong and who this is for, is not clear. My personal view is that women have the right to do what they want with their bodies. It’s about making informed decisions and not feeling the weight of a judgemental society coming crashing down on you.

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  4. I agree with the other people who have commented before: this is a very controversial topic. I have to say that I tend to be pro abortion in most of the cases, but when it comes to the Down syndrome, I don’t even feel able to formulate a clear opinion on that. I guess your post raised some interesting points that I’ll have the chance to analyze.

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