This blog is the second installment in a new series from Zetta Genomics CEO, Mark Bailley, on the opportunities of predictive genomics – and the challenges we need to overcome to realise them. Catch up on Part One of the blog series here.
The potential of genomic medicine is breath-taking. It offers the opportunity to predict, pre-empt and even prevent disease to improve health outcomes, revitalise health economies and democratise care – transforming the lives of billions of people across the globe.
We should, however, note the word “potential” here. We’re close to realising it, but there are significant hurdles. Perhaps the most overlooked – and worryingly underestimated – is education.
Predictive medicine – from science fiction to fact
We are on the cusp of a healthcare revolution: one that will see every human being on the planet having their genome sequenced at birth. We are already taking the step from science fiction to science fact.
In the UK, for example, Genomics England’s Newborn Genomes Programme is scoping out neonatal testing. While it’s currently limited to focus on nine rare conditions, a wider objective is to explore storing babies’ genomes, with the intention of allowing them to be re-analysed as needed throughout their lifetime, with the potential to access future advances in genomic medicine.
The implications for medical research, health economies, health systems and the billions of people they support are extraordinary. Yet, we must prepare for this future. As we approach the point where our unique genome instruction manual is sequenced at birth, we now face a daunting problem: how do we, as humans, deal with what it tells us?
Predictive genomics – a Pandora’s box
What is the right age, for example, to tell someone that they are at greatly increased risk of breast cancer – 10 years old, 15, 21? How do we explain the risks in ways that are meaningful to individuals? How do we translate these risks into treatment options? When and how do we tell someone that the best choice is a mastectomy? How do we counsel someone who is likely to suffer from a disease – in a year or a decade – that is currently untreatable?
These questions are just the tip of the iceberg – the application of genomic data in routine care demands a significant education programme. Unless we prepare people to read the genomic instruction manual properly, it may – like Pandora’s Box – contain more misery than hope.
Genomics England understood this a decade ago. It invested in a comprehensive public communications and engagement exercise called the ‘Genomics Conversation’ to benchmark general understanding of genomics. More specifically, it recruited skilled ‘Genomic Counsellors’ to help participants make sense of findings – both medically and emotionally.
These significant public and participant resources were needed for a programme sequencing 100,000 genomes over five years, but neonatal testing will involve sequencing the genomes of around 700,000 babies born in the UK every year.
A blueprint for education
In 2020 the UK Government published Genome UK: the future of healthcare, which outlines approaches to genomic medicine. While education is a key pillar, its focus is solely on the workforce. While health professionals are critical to the success of genomic medicine, so too is public understanding.
One thing is clear: as we move from predictive fiction to genomic fact, we will need to see many more genetic counsellors, specialists, population-wide engagement campaigns and innovative approaches to expand understanding.
If we are to realise the potential of genomic medicine, governments, health systems and the wider industry need to create an effective blueprint for education. And they need to create it soon.
Join us in the coming months for Parts Three and Four of the blog series, exploring further facets of architechting the future of predictive genomics.
