‘If we deny someone the chance to be born because we’ve already decided they won’t meet some predetermined measure of status or achievement, then we’ve seriously failed to grasp what it is to be human.’
Sally Phillips’ BBC2 documentary on the ethics of pre-natal screening is personal, moving and thought-provoking. It forces the viewer to consider the difficult and often ignored question: just because we can, does that mean we should?
The documentary looks at the ethical dilemma surrounding the newly introduced non-invasive prenatal test (NIPT) for Down’s Syndrome. The new test is set to become available on the NHS from 2018, and will provide women with the chance to discover whether their unborn child has Down’s from a much earlier stage in pregnancy. It reduces the need for the sometimes risky amniocentesis, as it offers a far more accurate assessment than the current method for early diagnosis.
This ability for early detection has raised concerns that a greater number of unborn babies found to have Down’s Syndrome will be terminated. This has been shown to be highly likely, especially considering the fact that in Iceland, where NIPT has already been implemented, the termination rate for Down’s Syndrome diagnoses is 100%. Groups such as ‘Don’t Screen Us Out’ have called for a delay on the test, arguing that there is a lack of information available to families facing the decision to terminate, and that this results in unnecessary fear surrounding the genetic disorder. They argue that this kind of screening violates the rights of disabled people, because it provides insufficient information to families, and instead often results in doctors immediately jumping to the suggestion of termination. They also suggest it contributes to the ‘informal anti-disabled eugenics’ process that exists in the world today.
As the mother of a young boy with the genetic disorder, Phillips is uniquely placed to consider this issue. Despite fears that this personal connection would result in bias from Phillips, in reality she achieves a highly sensitive and realistic exploration into the issues at stake. She achieves the aim of the program, to bring Down’s Syndrome out of the clinical discussion and into a more humanitarian one. She provides the viewer with insight into the reality of living with the disorder, but in an easily accessibly, relatable way. The documentary looks into several issues, including whether Down’s should be considered a severe enough disability to warrant termination up to full term, how people can be better educated about the disorder and supported through the process, and at what point we decide that screening has gone too far.
Phillips suggests that we are so preoccupied with misconceptions of perfection that we fail to recognise that it is in fact our differences that make society interesting. As we face a world where those who are different from the ‘norm’ are so often marginalised, isn’t it time we start to focus on embracing our diversity, rather than trying to suffocate it? Whatever your views on the testing, the documentary will force you to take stock and consider not only what it is we value in society, but also what it means to be human.
To learn more about the issue, take a look at Phillips’ Radio Times article, or watch the documentary:
http://www.bbc.co.uk/iplayer/episode/b07ycbj5/a-world-without-downs-syndrome?suggid=b07ycbj5