The Nuffield Council on Bioethics is considering the ethical issues raised by the increasing availability and use of non-invasive prenatal testing (NIPT) in the UK. We use the term NIPT to mean all kinds of prenatal genetic testing using fetal DNA from the placenta extracted from a sample of the mother’s blood.
Call for views and evidence (closed 1 Aug 2016)
To inform our deliberations, we held an online call for views and evidence from 19 May to 1 August 2016. This included an anonymous survey for anyone with a personal or professional interest in NIPT, and a consultation document with a longer set of questions for more in depth responses.
Evidence gathering meetings summer 2016
The Working Group has met with people who have experience of and views about NIPT, including:
- People with recent personal experience of prenatal screening – conversations with women who are or have recently been pregnant and their partners.
- People with genetic conditions – conversations with people who have genetic conditions that can be detected using NIPT.
- Companies developing and offering NIPT tests – meetings with people representing companies that are developing and offering NIPT tests.
- Regulators and professional bodies – a group meeting with government and professional bodies involved in regulation and policy making relevant to NIPT took place on 6 July.
- Families of people with genetic conditions – a group meeting with family members of people with genetic conditions that NIPT can test for, such as Down’s Syndrome, and the organisations that support and campaign for them, took place on 29 June.
- Healthcare professionals – a group meeting with healthcare professionals involved in the delivery of prenatal screening and NIPT in NHS and the private sector took place on 23 June.
If you would like to contribute to our work, to alert us to other people or organisations who would be interested in knowing about this project, or have any questions, please contact Catherine Joynson at firstname.lastname@example.org or Anna Wilkinson at email@example.com.