Learning disability nurses need to get involved with the ethical debate on prenatal testing
The availability of non-invasive prenatal testing has opened the debate about over-medicalising Down’s and other syndromes.
Nuffield Council on Bioethics has published a nine-month ethical review of the use of non-invasive prenatal testing (NIPT) prompted by availability of screening for genetic conditions in the private sector, and the possible future uses of technology to identify possible post-birth characteristics.
NIPT is a new technology that can identify and, in some cases, diagnose some genetic conditions and variations via a blood test rather than using invasive tests such as amniocentesis or chorionic villus sampling. In the case of Down’s, Edward’s and Patau’s syndromes, the new test is not sensitive enough to confirm a diagnosis, but it can produce a better estimate of the chances a woman has of carrying a child with those labels/conditions. NIPT could be used to map the whole genome, which has ethical implications for interactions between NHS and private practice.
During Nuffield’s data collection period, WeLDNurses hosted a Twitter chat on the subject, attracting 45 contributors and close to 400 comments. The resulting recommendations were submitted, and many of the concerns of learning disability (LD) nurses are reflected in the Nuffield report. It is pleasing that Nuffield has:
- Worked with Mencap to consult with people with Down’s syndrome and published an easy-read version of the report.
- Begun to transform the discourse from ‘risk’ to a ‘chance’ of having a child with Down’s syndrome.
- Considered issues of informed choice of women and families.
- Identified that LD nurses have a valuable and unique contribution to make to enable women, families and maternity services to support choice.
The review launch was hosted by House of Commons’ speaker John Bercow MP and Tom Shakespeare, professor of disability research at the University of East Anglia, who presented an overview of the review panel’s findings. It was acknowledged that terminology from the Abortion Act 1967 provides the basis for examining Down’s, Edward’s and Patau’s syndromes as ‘severe medical condition or impairment’.
This view was criticised by campaigner and parent Sally Phillips, who claimed that this was a lost opportunity to separate Down’s – where people with the syndrome have a life expectancy of 50-60 years – from Edward’s and Patau’s syndromes where, in most cases, babies will not live beyond a year. It was argued that society was maintaining a medical discourse and perspective on people with Down’s syndrome which was not congruent with social justice and encourages women to terminate their pregnancies.
There was encouragement to involve people with learning disabilities in the training of healthcare professionals. This prompted recognition that this publication was also the start of the implementation stage and plans for its provision and delivery were being developed by Public Health England.
We posit that LD nurses’ critical eye for identifying health inequalities for children and adults with learning disabilities – while supporting access to and navigating with people and their families the mainstream healthcare services – will be crucial in contributing to the education, training and implementation of NIPT to ensure that the narratives and themes of living with a learning disability in society are provided proactively, realistically and with hope for the future. Whether you have a pro-life or pro-choice stance in this contentious area, we take a pragmatic perspective that the unique knowledge and experiences of learning disability nurses make us best placed to contribute to this implementation process.
About the authors
Daniel Marsden is a consultant nurse, Hertfordshire Partnership University NHS Foundation NHS Trust and Centre for Learning Disability Studies, University of Hertfordshire
Ross Wyatt is a community nurse, Northumberland Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne
The authors run WeLDNurses along with Sally Wilson and Samuel Adbulla