However it seems appropriate also to consider who and what is behind the drive to implement these new tests nationally.
While the NHS would implement the tests, there are some who will stand to gain financially from it: the test manufacturers and suppliers. That is not surprising of course, and to be expected.
However of more interest is that one of the National Screening Committee stakeholders (reviewing and recommending implementation of these tests) is Antenatal Results and Choices (ARC). ARC is probably the best known charity offering advice on screening, which claims to offer women: ‘non-directive information and support’.
However ARC has just announced a corporate partnership with one of the leading suppliers of the UK screening test. This is an addition to its ‘partnership’ with at least seven other providers of screening tests!
In other words, regularly advising the Government’s National Screening Committee, and thus Government policy, is an organisation that is financially partnered with, and inextricably linked to, all the main providers of the very tests they are pushing to implement!
The test manufacturers must be delighted to have such good access to the ‘review’ process.
It’s surely not too dissimilar, in principle, to all major weapons manufacturers financially supporting and advising a Government committee which has been set up to decide whether to use those weapons in a war.
I cannot see how this can be considered to be an unbiased review of the need for implementation of the tests. There are far too many vested ideological and financial interests at stake, driving this through.
Moreover, there should be no adoption of such policies without full participation of those whose interests are directly affected by them. Whilst a number of disability and DS related groups were identified as stakeholders, it could be argued that the consultation process could have better included people who have DS and other trisomies by providing better advertising of the consultation itself, and by providing days through which their recommendations could be clearly presented. These would have given them an opportunity to directly state how the proposed changes in policy would affect them and future generations.
Karen Gaffney is a forty year old woman who has a science degree, an honorary doctorate and is a champion swimmer who has crossed the Channel in a team relay event. She also has Down Syndrome. In May this year she gave a captivating and erudite TED talk that all the National Screening Committee ought to listen to, before deciding to implement tests that deliberately search out people like Karen, simply because they have one extra, detectable, chromosome.