The Council convened a roundtable meeting in London in January 2016 to discuss any issues raised by recent developments in non-invasive prenatal diagnosis, testing and screening. The meeting was attended by 31 people, who included healthcare professionals, academic researchers, policy makers, representatives of charities and patient groups, and members of the Nuffield Council on Bioethics. A note of the roundtable meeting is available to download.
Vardit Ravitsky, Associate Professor at the University of Montreal, Canada, was commissioned by the Council to write a background paper on NIPT to inform the discussions at the meeting. The paper provides an overview of clinical, ethical, social, legal and policy issues. It is not intended to offer any conclusions or recommendations regarding future policy and practice.
After considering the discussions that took place at the roundtable meeting, in March 2016 the Council decided to set up a Working Group to consider in more depth the ethical, legal and regulatory implications of recent and potential future developments in NIPT. The Group is chaired by Tom Shakespeare, Professor of Disability Research at the University of East Anglia. The members of the Group bring expertise in clinical genetics, genetic counselling, psychology, law, ethics and disability studies. The members were appointed for their professional knowledge and expertise, and their ability to examine the evidence and views that will be gathered during the project.
The Terms of Reference of the project task the Working Group with considering questions about the use of NIPT in NHS screening programmes, the provision of NIPT in the private healthcare sector, the responsibilities of providers to ensure individuals and couples are making informed choices, and any wider implications for society of increased uptake of NIPT, for example for people with disabilities. The Working Group will engage with a range of people and organisations in the consideration of these issues. Read a discussion of how the Council tries to engage people in its work and why.
The Council will report the findings of the project early 2017.
To express an interest in this project and to receive alerts about calls for evidence and views, please contact Catherine Joynson, Programme Manager firstname.lastname@example.org