UK public at odds with health profession on genetic testing of children

Philippa Brice

11 November 2014

A new study has found that a significant divergence between the views of the British public on genetic testing of children for adult-onset disorders and those of genetics health professionals.

Writing in the European Journal of Human Genetics, British researchers note that professional organisations are opposed to the genetic testing of children in the absence of options for prevention or treatment to improve outcomes. In these circumstances, testing is typically postponed until the child reaches an age where they can decide for themselves whether or not they wish to be tested. However, health professionals often report parental requests to test their children for adult-onset conditions.

Public views on genetic testing of children

To determine public opinions on this issue, and also on genetic testing of children to establish their ‘carrier’ status and reproductive risk (that, whilst healthy themselves, they may pass on a harmful genetic or chromosomal variant to their own offspring). An online survey of a representative sample of just under 3,000 adult members of the general UK public was performed.

Almost half (47%) respondents thought that parents should be allowed to test their children for adult-onset conditions without medical reasons to do so; 33% were unsure and just 20% thought it should not be allowed. An even higher proportion (60%) agreed that parents should be allowed to have their child tested for reproductive risks, with 26% unsure and just 14% opposed.

Examining different possible reasons for delaying genetic testing of children, leaving the child the option to decide for themselves in the future had the least support, with 37% of people considering this a good reason, compared with 45-46% in support of other reasons (risk of stigma or discrimination, lack of understanding of the condition, or lack of medical benefit).

Why do the views of the public and professionals differ?

Examining the possible reasons for the apparent lack of alignment between the views of the public and agreed professional practice, the authors suggest they may include a parental belief in their own ability to use information about adult-onset conditions to inform and improve care for their child, or a general impression that genetic testing is beneficial as a result of media coverage of progress in genetics and personalised medicine. This is typified by the general media coverage of the 100,000 Genomes Project. They note that as genetic and genomic testing and analysis become more widespread, both in health systems and direct-to-consumers,  they may not appreciate the ‘difficulties in interpreting and incorporating the results into daily life, nor that there may be disadvantages to certain types of testing’.

Implications for genomic medicine

This new research is a timely contribution to knowledge as what is so often dubbed the ‘genomic revolution’ gathers pace and preparations for the broader application of genomics in medicine and public health continue.

Whilst observing that the survey responses do not necessarily reflect real-world behaviour, the authors conclude that genetics health professionals should bear these public attitudes in mind and emphasise the more compelling reasons for delaying genetic testing of children (such as the lack of medical utility and risk of stigmatisation). This view is of course based on the assumption that the consensus professional view is the correct one, and the public’s divergence from this view is based solely on incomplete understanding and experience of the potential negative impacts of unnecessary genetic testing of children.

Although there is good reason to suppose the expert genetics health professionals, are correct in this belief, it is also possible that, just as public understanding of the impact and limitations of potentially predictive genomic information must improve alongside the introduction of personalised medicine, the views of professionals may also have to alter somewhat. Already, some enthusiasts are proponents of newborn whole genome sequencing and analysis, arguably the ultimate in childhood genetic testing. Whilst many are convinced of the potential benefits for ill newborns, the scope for wider application is causing concern for some.

At present, clinical genetics practice is largely confined to severe forms of heritable disease; in the future, genetic testing may become just one component of practice for a much broader group of health professionals. As genomics is used to inform risk prediction for common health conditions, or as a general component of medical evaluation and diagnosis, there may be an increasing need to balance the potential harms for children against what will (hopefully) be the increasing medical benefits of early testing.