Genomic natives? Young people clued up about whole genome sequencing

Young people are surprisingly well-informed about the basics of genetics and thoughtful about the kind of information they'd like to receive from genome studies, results from an international survey suggest.

'While it's a little premature to start speaking of "genomic natives" as the media does about "digital natives", our results show that young people's understanding of genetics is at least on a par with adults'', said Dr Anna Middleton - senior scientist at the Wellcome Trust Sanger Institute, Cambridge, and co-lead researcher of the GenomEthics study.

Research using whole genome sequencing (WGS) technologies - where all of a person's DNA is decoded - is increasingly common, but there are many dilemmas over what information, if any, should be given to research participants.

The GenomEthics study, run by researchers at the Sanger Institute, seeks to resolve some of these dilemmas by asking people directly what they think via an online questionnaire available at the GenomEthics website.

The questionnaire was not designed with young people in mind, but when the first tranche of completed surveys were analysed, 222 out of the 6,944 respondents were found to be 19 or younger, giving researchers a unique insight into the generation growing up as WGS nears widespread use.

Participants' understanding of genetics was assessed by asking two true-or-false questions: 'A condition is only genetic if more than one family member is affected' (correct answer — false), and 'Some genetic conditions express themselves later in adult life' (true). Young respondents gave correct answers in 75 percent and 95 percent of cases respectively. This did not represent a significant difference from the accuracy of adults' responses.

Furthermore, Dr Middleton says that her preconceived ideas of how young people would answer were scotched in two important areas.

For one, she says, 'I thought young people would be fearless and they'd just want to know everything from the raw data. In fact, they were slightly more likely than adults to be "information discriminators", that is they were slightly more cautious in selecting the information they would like access to'.

It would appear from the survey that whether or not young people wanted access to personal genetic information was largely determined by its usefulness. In other words, they were more likely to want information about a genetic variant predisposing to a preventable medical condition than an unpreventable one.

The second surprise was that, when it came to how they wanted the information to be presented, younger respondents were rather traditional.

'I assumed that younger respondents would mostly want information to be delivered electronically and wouldn't be interested in engaging with health professionals', says Dr Middleton. 'That was not the case at all'.

Indeed, in response to the question 'How should information relating to serious life-threatening conditions be delivered?' 85 percent favoured direct contact with a health professional.

However, despite the reassuring signs from the survey that young people are thoughtful, well-informed and well-prepared for the genomics revolution, Dr Middleton has this message for policymakers: 'Getting genomics onto the school curriculum remains an absolutely urgent issue. It is being introduced and young people need to understand that knowing something about genomics will be relevant for the whole of their lives. Genomics is what connects us all. Not only is it relevant to our health, but it explains who we are'.

'Very soon, the NHS will be embracing genomic data on a large scale and that means that it is likely to crop up during routine engagements with healthcare professionals. At least knowing the basics about genetics will put young people ahead of the game'.

Dr Anna Middleton was talking about her work prior to her presentation 'Young people and sequencing technologies: confusion and clarity' given on Tuesday 23 September 2014 at the British Society for Genetic Medicine's annual conference at the Liverpool Arena and Convention Centre.