Language is important. The words we choose to use can have consequences for others. Some of these are intended, others can be unintentional.
Importantly, over recent times, there has been an agreed approach of co-production across public services, especially (and rightly) within the NHS. The views of relevant stakeholders are sought and a consensus is reached.
We have worked extensively with relevant bodies, including:
- The National Screening Committee;
- The Fetal Anomaly Screening Programme;
- Antenatal Screening Wales;
- The Royal College of Midwives;
- The Royal College of Obstetricians and Gynaecologists;
- NHS England; and
- NHS Digital…
…to ensure that the lived experience of individuals who have Down’s syndrome and their families is shared and acknowledged. This is crucial when we consider the unintentional consequences of the language used in resources to support discussions in a health setting.
Changes in the use of language have been incremental and involved considerable deliberation, but the adoption of the term ‘chance’ as opposed to ‘risk’ when talking about the results of antenatal screening results has been fairly uncontroversial.
Midwives, screening coordinators, genetic counsellors, pregnant women who access maternity services and the parents of babies who have been born with one of the conditions for which an antenatal test is possible, have agreed that the word ‘chance’ was less emotive. It was neutral, whilst losing nothing in the meaning conveyed.
We were surprised by the conclusions offered by the researchers Nick Wald, Jonathan Bestwick and Joan Morris. Using the term ‘disorder’ when describing Down’s syndrome is offensive to individuals who have Down’s syndrome. Drawing comparisons between antenatal screening programmes (which give pregnant women useful information about their pregnancy and their developing baby) and screening programmes for cancer are also unhelpful and misplaced.
Their call for us to revisit a discussion where consensus has been reached many years ago seems like a step back in time.
Wald N, Bestwick J, Morris J. Risk or chance. Journal of Medical Screening. January 2022.
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