Disability Detection and Foetal Decision-Making through Non-Invasive Prenatal Testing (NIPT) – a colloquium
16 JUNE, 2014: 9:30-18:00
Venue: University of Sussex, Falmer, near Brighton, UK
The Centre for Bionetworking is organising a two-part event on NIPT, starting with a colloquium in June 2014, followed by a conference in 2015. The colloquium focuses on social, cultural and regulatory issues in current practices of NIPT in European countries, together with a reflection on the state-of-the-art in foetal genomic screening, while the conference will emphasise the international and transnational dimensions of NIPT and future developments in genomics.
Technologies developed for non-invasive alternatives to invasive approaches to prenatal genetic diagnosis have been introduced to the clinic quicker than any other technologies thus far. The introduction of NIPT provides access to genetic diagnosis for pregnant women and couples from a blood test performed early in pregnancy. Apart from the possibility of early use, the screening method is comparatively efficacious, and facilitates application. These factors entail a new configuration of decision-making, responsibilities and financial implication, which call for a rethink of the organization of prenatal examinations.
It is expected that the range of applications of NIPT will be extended from a limited range of chromosomal disorders, such as an early Down Syndrome diagnostic testing, to a broader range, including single gene disorders and predisposition testing. Commercial applications and direct to consumer sales are already available in Europe, and the uptake of NIPT by healthcare systems is expected to take place in the near future. However, the extent to which this will happen largely depends on the methods, healthcare systems, regulation, and practices that currently prevail.
In Europe, developments in NIPT have provoked discussion in clinical, policy and ELSI circles. The availability of earlier, more accessible and potentially extended prenatal testing raises ethical, legal, clinical and social issues, which play out differently in various countries for a variety of reasons to do with the current institutional embedding of prenatal testing, its regulation and social acceptance. This colloquium aims to identify patterns of differences and similarities in the ways that NIPT are being adopted and to understand the context in which future developments need to be understood.
The colloquium serves as a preparatory stage for a conference on the international and transnational aspects of NIPT that emphasizes the discussion of future prospects and choices in need of public deliberation. Input from international expertise, in turn, will help us gain insight into the way public engagement can be framed most productively and fairly.
The purpose of the colloquium is to:
– Establish the extent and the ways in which NIPT is being adopted in Europe;
– Examine how NIPT affects existing practices of foetal screening and diagnosis in Europe;
– Determine how NIPT is being marketed and financed in countries with different healthcare arrangements;
– Delineate the social, ethical, technical and regulatory issues involved in the adoption of NIPT compared to former forms of prenatal testing (PNT);
– Reflect on how maternity services and prospective parents can deal with a possible extension of the number of conditions for genetic screening;
– Discuss how NIPT influences reproductive decision-making by prospective parents
– Deliberate measures that maternity services and policy-makers need to make as a result of developments in NIPT.
The colloquium will be open to a small number of scholars with expertise in new reproductive technologies and NIPT in Europe (invites only).
The conference will address international and transnational issues of regulation, the marketization of NIPT, and the ways future developments in NIPT are likely to interact with norms and values in societies. The colloquium will be open to all who are interested in NIPT.