‘Risk or chance’: Authors’ response

We welcome Professor Steele's letter ¹ as a contribution to the discussion on the words ‘risk’ and ‘chance’ in relation to medical screening.

All screening programmes seek to offer individuals the option of avoiding what each individual concerned regards as an unwanted outcome. Professor Steele accepts the use of the word ‘risk’ for non-antenatal screening, such as bowel cancer screening, where there is an outcome that many people wish to avoid. It is recognised that some people choose not to be screened. The same principles should apply to antenatal screening for Down's syndrome, Edwards’ syndrome and Patau's syndrome. Women for whom a pregnancy with Down's syndrome, Edwards’ syndrome or Patau's syndrome is not an unwanted outcome can decline the offer of screening. The purpose of screening for these three syndromes is to provide women and their families with the opportunity to either prevent the birth of an affected child or else to come to terms with the occurrence of an affected pregnancy before birth. The serious reality of all medical screening needs to be recognised; in the circumstances the word ‘risk’ has the merit of candour without any implication of disrespect.

Professor Steele's case for requiring antenatal screening programmes to use ‘chance’ instead of ‘risk’ touches on an important issue of local autonomy. While it is, in our view, appropriate for the UK National Screening Committee (NSC) to set standards that support worthwhile screening programmes it should not micromanage the programmes that are delivered. The NSC should give guidance and set standards but not provide detailed protocol specification that may hold back innovation and reduce local responsibility for the services provided.

In antenatal screening women with screen-positive results are counselled to help them decide whether to have a diagnostic amniocentesis. Screen-positive reports should use language that indicates clearly the need for counselling; use of the word ‘risk’ puts the healthcare staff on alert that this is needed while ‘chance’ may have a weaker effect.

We recognise that opinion differs on the use of ‘risk’ or ‘chance’ in regard to medical screening. Our concern is that in antenatal screening proscribing the word ‘risk’ is excessive and has unwanted implications. There should be no pressure or compulsion to censor the word from local leaflets, screening reports and in counselling.

It would be useful if the opinion survey results referred to by Professor Steele were published with relevant study details rather than as an informal collection of opinions. The hyperlinks in Professor Steele's letter do not provide this detail.