To ask Her Majesty’s Government, further to the Written Answer by Lord Prior of Brampton on 23 March (HL 7087), why, prior to the decision to introduce non-invasive prenatal testing (NIPT), they did not (1) meet people with Down’s syndrome and their families to discuss their concerns, (2) conduct an assessment of the impact of the introduction of NIPT on people with Down’s syndrome and their families and communities, (3) conclude an ethical review of NIPT, and (4) meet obligations arising under the Equality Act 2010.
Answered on
22 November 2016
The UK National Screening Committee (UK NSC) has recommended that non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndromes should be introduced as an additional test into the NHS Fetal Anomaly Screening Programme as part of an evaluation. NIPT presents a more accurate and safer screen for Down’s syndrome and reduces the need for diagnostic invasive prenatal testing, which carries a risk of miscarriage. Modelling suggests that NIPT, as an additional test in the current screening pathway will result in the number of women offered invasive prenatal diagnosis (IPD) tests reducing from 7,910 to 1,434, leading to a reduction in IPD-related miscarriage of pregnancies from 46 to 3 per year. The new test will be offered to pregnant women whose chance of having a baby with Down’s, Edwards’ or Patau’s syndromes is greater than 1 in 150.
As is standard UK NSC procedure, a three month public consultation was held on the UK NSC’s review of NIPT for Down’s, Edwards’ and Patau’s syndromes. 30 stakeholders responded to the consultation, including organisations representing the interests of people with Down’s syndrome and their families and the Royal College of Obstetricians and Gynaecologists. The core aim of the NHS Fetal Anomaly Screening Programme is to provide information and choice. The cost analysis considered by the UK NSC related solely to providing choice and did not take into account the lifetime costs of caring for children and adults with Down’s syndrome.
In forming its advice, the UK NSC did give consideration to its ethical implications, in addition to the ethical issues raised in consultation, and formally considered the write up of the roundtable discussion, which was held by the Nuffield Council on Bioethics in January 2016. The roundtable discussions examined the ethical issues relating to the use of NIPT; a note of the meeting held on 18 January 2016 is attached. The UK NSC also sought expert input from its members in obstetrics, midwifery, paediatrics, genetics, patient and public voice alongside advice from the Department and was satisfied that the NHS Fetal Anomaly Screening Programme is compliant with obligations under the UN Convention on the Rights of Persons with Disabilities and that the Programme is compliant with any obligations under the Equality Act.