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GOVERNMENT CONFUSION OVER NIPT TESTING HAS MAJOR IMPLICATIONS

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24 May GOVERNMENT CONFUSION OVER NIPT TESTING HAS MAJOR IMPLICATIONS

Pregnant individuals in Wales who participate in antenatal screening are offered a triple test. Since 30th April 2018, if those test results indicate a higher chance that their baby has a genetic condition, including Down’s syndrome, they will be offered an optional second screening Non-Invasive Prenatal Test (NIPT). NIPT is a DNA test considered to be more reliable than the current triple test.

However, it transpires that Members of the Welsh Assembly have not fully understood the implications of introducing NIPT. They claim that NIPT doesn’t raise any new ethical issues. Yet, they are aware of the Nuffield Council Bioethics Report entitled ‘Non-Invasive Prenatal Testing: ethical issues.

Introducing population DNA testing without acting on the ethical issues has major implications for society including the communities of people living with the tested-for conditions.

We ask that anyone in the UK concerned about this issue contact their MP, their AM or MSP, as appropriate, asking for a full investigation as to why the ethical issues of NIPT, which the UK Government acknowledged as early as 2015, have not yet been addressed, when Nuffield Bioethics Council have highlighted many of the issues in their 169-page 2017 NIPT report.

We have written to the Welsh Minister of Health, asking for the appropriate remedial response to implementing a Public Health Programme without due diligence:

‘Dear Vaughan,

I’m writing with regard to what appears to be some misunderstanding regarding the Nuffield Bioethics Council view on the ethics of introducing NIPT into UK Public Health Screening Programmes.

We have been recently contacted by several campaign supporters who have been told by their AMs that NIPT does not raise any new ethical issues. In actual fact, Nuffield Bioethics Council published a 169-page 2017 report on NIPT because ‘NIPT raises a broad range of ethical issues’.

This is a deeply worrying situation, as it is logical to assume that this misinformation has influenced the decision to roll out NIPT in Wales at an early stage, thus exposing women undergoing screening to unassessed risks, making screening less safer than before.

Due to this new realisation that NIPT introduces us into a whole new era of genomic testing with new considerations, can I now ask whether you agree that the rollout of NIPT in Wales should be halted until the ethical issues are defined, considered and dealt with?

I’m copying in Dr. Louise Bryant who was a member of the Working Party carrying out Nuffield’s research on NIPT and is currently Chair of the FASP Information and Education Sub-group for the NHS NIPT roll out, who may be able to assist your department, and the Welsh Assembly, to become fully informed on this matter.

I will also forward a copy to the UK Minister for Screening.’

Best Wishes

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