Comment

Down’s syndrome screening: women must have the right to choose

The BBC documentary A World Without Down’s Syndrome suggested that a highly accurate prenatal test is a threat to the Down’s community. ARC antenatal charity director Jane Fisher, who was interviewed for the programme, says it ignored the benefits of screening and the need for informed choice
Antenatal screening

The BBC documentary A World Without Downs Syndrome suggested that a highly accurate prenatal test is a threat to the Downs community. ARC antenatal charity director Jane Fisher, who was interviewed for the programme, says it ignores the benefits of screening and the right of informed choice

Antenatal screening for Downs syndrome, and particularly the potential NHS implementation of the more sensitive cell-free DNA screening known as NIPT (non-invasive prenatal testing), has had intense media coverage recently, prompted by the screening of the BBC2 documentary A World Without Downs Syndrome.

In the programme, actress Sally Phillips takes the viewer on a heartfelt personal exploration of the ethics of prenatal screening, very much informed by her experiences bringing up her son Olly, who has Downs syndrome.

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The BBC documentary A World Without Down’s Syndrome suggested that a highly accurate prenatal test is a threat to the Down’s community. ARC antenatal charity director Jane Fisher, who was interviewed for the programme, says it ignores the benefits of screening and the right of informed choice    

Antenatal screening for Down’s syndrome, and particularly the potential NHS implementation of the more sensitive cell-free DNA screening known as NIPT (non-invasive prenatal testing), has had intense media coverage recently, prompted by the screening of the BBC2 documentary A World Without Down’s Syndrome.


 It is vital that women receive accurate information, whatever decision they make about their pregnancy. Picture: iStock.

In the programme, actress Sally Phillips takes the viewer on a heartfelt personal exploration of the ethics of prenatal screening, very much informed by her experiences bringing up her son Olly, who has Down’s syndrome.

I was involved in the programme on behalf of the charity ARC (Antenatal Results and Choices) and last December filmed a 2-hour interview with Ms Phillips to discuss our work and our support for choice. I was pleased that we made it into the final cut (many didn’t), but my contribution was edited down to around 2 minutes.

This is understandable, given that Ms Phillips’ focus is on the positives of living with Down’s syndrome and her passionate desire to encourage inclusivity. There is no question this is a laudable aim and particularly important at a time when people with disabilities face swingeing cuts in care provision.

However, the emphasis on the joys meant there was little mention of the challenges faced by those families of children with Down’s syndrome who have more severe learning disabilities or debilitating associated health issues.

Screening choices

The programme title suggests that we are facing the possible eradication of people with Down’s syndrome because this more accurate screening test will ultimately lead to more terminations. In the programme, Ms Phillips visits Iceland, where 100% take up of NIPT has led to no births at all of babies with Down’s syndrome.

It is important not to assume what is happening in Iceland (with just over 4,000 births a year) will happen here. Within the NHS, screening will always be presented as a choice; some women will choose not to screen and some will screen but choose not to have a definitive diagnosis.

A further problem with the programme’s hypothesis is that it suggests women making difficult decisions about their pregnancy should be concerned about what a choice to terminate might mean to the Down’s syndrome community.

A woman deciding to end her pregnancy knowing her baby has Down’s syndrome is not seeking to devalue anyone, but is doing so for her own reasons, pertinent to her individual circumstances.

Support for women

Most of the media discussions have involved criticism of healthcare professionals. The common cry has been that they encourage women to have screening and push them towards termination should they receive a diagnosis.

While there may be some poor practice – which of course we must address – feedback from our helpline and our close working relationship with a wide range of professionals reassures us that the vast majority do the best they can to deliver good care and ensure women are supported in making their own decisions. 

The NHS fetal anomaly screening programme is predicated on individual informed choice. It is vital that expectant parents receive accurate information and are fully supported by their healthcare team, whatever decision they make about their pregnancy.

In these sensitive circumstances we can and must trust them to make the decisions that are right for them.

About the author

Jane Fisher is director of Antenatal Results and Choices, a charity that provides non-directive information and support to women and couples on antenatal screening and its consequences. ARC also provides training to health professionals 

 

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