Response to Editorial: ‘Risk or chance’

Dear Editors,

In a recent editorial in the Journal of Medical Screening, Wald and colleagues express their concern about the decision to replace the word ‘risk‘ with the word ‘chance‘ when referring to antenatal screening for Down‘s syndrome, Edwards’ syndrome and Patau‘s syndrome. ¹ They make the points that the term ‘risk‘ implies an unwanted outcome (for example, stroke) whereas the term ‘chance‘ is associated with a desired outcome (for example, chance of winning the lottery).

They then state that the change is inappropriate since using the word ‘risk‘ does not have negative connotations and does not reflect on the worth of the individual concerned whether they have suffered a stroke or are born with Down‘s syndrome. Further, they suggest that because screening involves seeking consent, the risks associated with a positive screening test result need to be understood and not seen as chance events. They worry that imposing the change in terminology is authoritarian and dangerous, reminiscent of George Orwell‘s ‘1984‘.

I believe their concern is seriously misplaced and that reverting to the use of the work ‘risk‘ in this context would be inappropriate.

As the authors correctly state, national NHS screening information leaflets and template screening test result letters now use the word ‘chance‘ rather than ‘risk‘ when referring to antenatal screening test results for Down‘s syndrome, Edwards’ syndrome and Patau‘s syndrome. The change followed consultation with women and their families, charities, academics, and professional organisations.

I wish to address three fundamental points made by the authors in relation to this change: the semantic implications of the words ‘risk‘ and ‘chance‘, that the change is not justified, and that it is misplaced.

First, the word ‘risk‘ is always applied to something undesirable, whereas, contrary to their contention, the word ‘chance‘ is actually neutral and can apply equally to wanted and unwanted outcomes (for example, there is a chance that a train will be on time, and there is a chance that the train will be late).

Given this, the UK National Screening Committee (NSC) decided it was correct to replace ‘risk‘ with ‘chance‘ for several reasons – particularly out of respect for people with disabilities and their families. This culture of respect is one of the four main UK NSC principles as set out in its ethical framework for screening. ²

There were objections to the use of the word ‘risk‘ in previous screening information from parents with children with Down‘s syndrome, Edward‘s syndrome and Patau‘s syndrome. Many people with Down‘s syndrome also reject the use of the word ‘risk‘ in this context. In consultation, families and user groups told the NSC they felt that ‘chance‘ is a less value-laden word and has no negativity attached.

The Nuffield Council on Bioethics’ report on non-invasive prenatal testing (NIPT) ³ states: “The language of screening must be respectful to all those concerned, particularly women and disabled people.” (paragraph 5.27). Feedback supports the NSC‘s approach, with the Down‘s Syndrome Association in particular welcoming the updated terminology (see PHE Screening blog article ⁴ in March 2019).

Just to clarify, I do not suggest that the word ‘risk‘ can never be used when talking about screening – one talks about ‘risks’ of bowel cancer in public information, ⁵ as an example.

To suggest that the word ‘risk‘ does not imply diminished worth of an individual ignores the difference between screening for a disease and screening for Down‘s syndrome. In Down‘s syndrome screening, a positive test result indicates an increased likelihood that the child has Down‘s syndrome. Referring to this as a ‘risk‘ clearly implies that having Down‘s syndrome is undesirable. While this may be the case in some people‘s minds, this is not universal, particularly for those living with the syndrome and their families.

The NSC blogged extensively ahead of updating the templates for local services to use to explain the evidence-based reasons for the new terminology and the response was overwhelmingly positive. The change, which I see as an improvement, to the terminology in the screening for Down‘s syndrome, Edwards’ syndrome and Patau‘s syndrome is something I am extremely proud of.

Using ‘chance‘ instead of ‘risk‘ is more sensitive language that takes account of the values and feelings of people who use screening services, and in no way dilutes the value of the information given in facilitating personal informed choice. In fact, I would argue that using what I see as more neutral language improves it. The word ‘chance‘ allows people to decide for themselves about what their result means to them and make their own decision about any next steps.

The NSC is clear that NHS screening programmes should provide people with accurate, balanced, clear, concise information in a sympathetic way that supports them to make the right choices for them. Guidance for the development, production, and review of information to support UK population screening programmes has been produced in support of this. ⁶

It is well established that framing of outcomes in terms of losses or gains materially affects people‘s decision making. ⁷ Using the word ‘risk‘ therefore creates a negative frame and evokes an ‘affective bias’, appropriate only if your aim is to encourage screening uptake rather than to inform choice. In contrast, ‘chance‘ is an emotionally neutral term that enables people to process the information without being nudged towards one decision. The screening programme does not view either decision, to have screening or to not have screening, as preferable.

The authors do concede that the word ‘chance‘ may be used when deemed appropriate, for example when speaking to people considering antenatal screening. But I believe that completely removing the concept of risk from antenatal screening, in the context of Down‘s syndrome screening, takes an evidence-based, respectful, and ethical approach, consistent with the values of the screening programme.

Terminology is always evolving, as is the evidence base around effective and ethical health communications. The UK NSC will continue to keep up to date with these changes.

The NSC is determined to carry on involving all our stakeholders, including the people offered screening, in regular updates of our public information. This involves listening to them and taking account of their concerns, while providing information which supports people to make a personal informed decision about screening.