1st March 2017
From Anna Wilkinson, Programme Officer with the Nuffield Council on Bioethics:
The Nuffield Council on Bioethics today has today launched its new report Non-invasive prenatal testing: ethical issues which explores the ethical issues raised by non-invasive prenatal testing (NIPT).
Over the course of our one-year inquiry we consulted a range of people with different interests in NIPT, including people with Down's syndrome and other genetic conditions, women who have undergone NIPT, healthcare professionals, charities and professional bodies. In the report we set out a number of conclusions, including the following:
- NIPT is a powerful and important development. It can bring benefits, but it needs to be used with caution if it is to support reproductive autonomy, avoid harm, and promote equality and inclusion in society.
- We support the use of NIPT in NHS screening for Down's, Edwards' and Patau's syndromes, provided that it is accompanied by accurate, balanced and non-directive information and support.
- We support the use of NIPT to diagnose rare genetic conditions in the NHS. It is important for the NHS to ensure that it has sufficient genetic counselling resources.
- If this test is to be offered, both through the NHS and in the private sector, the Government must ensure it is meeting its duties to support disabled people and to tackle discrimination.
- We are concerned about the way it is sometimes offered and presented in the private sector and recommend that the promotion and marketing of the tests should be more closely monitored and regulated.
- NIPT should not be offered for less significant conditions or for sex determination (other than when a serious sex-linked condition is suspected).
- NIPT should not be used for whole genome sequencing of fetuses, other than in exceptional cases where there is a particular concern about a condition of unknown cause.
A short guide to the report, a one page summary and an 'Easy Read' version of the report are also available on the Nuffield Bioethics website.
'The AGNC welcomes the report's acknowledgement that genetic counselling services will need to grow to meet the information and support needs of those patients undergoing testing.'
Peter Marks, AGNC Chair