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.
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.
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.
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
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
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.
Dr Middleton says that her preconceived ideas of how young people would answer
were scotched in two important areas.
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'.
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
second surprise was that, when it came to how they wanted the information to be
presented, younger respondents were rather traditional.
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'.
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.
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'.
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