- There has never been a more important time to start a public conversation about genomics.
- This will require developing a new language around the technology to make it meaningful to the general public.
- A global PR campaign could help to demystify this increasingly important branch of medical science.
Genomics. Genomic medicine. Personalised medicine. These are very much the buzzwords of our time when it comes to healthcare. But on hearing them for the first time, what do these terms actually mean to people? One research participant who had never heard of the term genomics before, broke the word down phonetically and suggested: "Is genomics something to do with genes and economics?"
It's not an unreasonable question, and it's helpful to be reminded periodically that as a biotechnology community we need to bring everyone up to speed with what we are actually talking about.
Genomics is emerging as one of the main sources of data across many disciplines of medicine and healthcare, so there has never been a more important time to spark public interest in what it can do for people and how they might benefit (and contribute). But how do we start these conversations when often the science, as well as the surrounding language, can seem alien and impenetrable?
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It is likely that some of us have already had form of genomic test already, and even if we haven’t personally, someone we are biologically related to may have done. This may be as part of a routine or in-depth health check, for research purposes or even as part of an online ancestry test.
The first time we come in contact with genomic technology may be an overwhelming or even confusing experience, revealing much more information than we may have anticipated. For others, the situation may be less intense or even recreational, meaning less care will be given about the science that exists behind those tests – or consideration of the implications.
Whatever the experience for the individual, it is crucial we reach people with the right information to both dispel the myths around genomics, and make it meaningful. For many, results from genetic tests will end up being a wider conversation, where individuals will be expected to consider what the test means, and its future implications for other relatives.
This means work is needed to find a language that is both memorable and resonates with everyone. But how is this achieved? How can we make genomics and genomic testing seem much less daunting to talk about? What sort of framings – narratives, metaphors, mantras and memes – can we use to socialise an otherwise dense topic that even healthcare professionals find difficult to navigate?
The only way to achieve a model that works for both professionals and members of the public is to open up dialogue to all groups of people to create a new shared understanding, and an accompanying language that provides clear guidelines around the tools and narratives to be used to achieve best practice. There needs to be a balance of investment where increasing ‘genomic literacy’ through education (valuable though it is) is only one part of the package. Often what is missed is investment in ‘how’ to engage and reach currently disconnected members of the public who have never given any thought to the subject. Why is this important? Because as genomic medicine goes mainstream, they may be a ‘patient in waiting’ or related to someone who is. This means that the relevance of genomics has moved beyond the individual to the family, and then on to broader society.
Healthcare professionals need a clear understanding about how to talk to patients. Recognising that patients do not need to understand the technical concepts to make sense of the testing process, or to make informed choices for themselves and their family, is a first step in creating a mutual respect between these stakeholders. Patients need to feel more confident and familiar with what genomics means for them, and more at ease about discussing it, just as we would for common illnesses.
It’s time for us collectively to turn conversations about the impact of genomics into something sociable, easy to navigate and familiar. Just as we have started to embrace discussions on the impact of vaccines and climate change, so too is this necessary for genomics – as without it, the impact of genetics will be misinterpreted. Cross-disciplinary expertise is needed for this – drawing together input from both the arts and sciences but also from storytellers from the advertising and film industries, and utilising evidence-based engagement and narrative techniques. This evidence must not be one-sided, however, and should incorporate different experiential and social understandings held by different members of society.
How is the World Economic Forum bringing data-driven healthcare to life?
The application of “precision medicine” to save and improve lives relies on good-quality, easily-accessible data on everything from our DNA to lifestyle and environmental factors. The opposite to a one-size-fits-all healthcare system, it has vast, untapped potential to transform the treatment and prediction of rare diseases—and disease in general.
But there is no global governance framework for such data and no common data portal. This is a problem that contributes to the premature deaths of hundreds of millions of rare-disease patients worldwide.
The World Economic Forum’s Breaking Barriers to Health Data Governance initiative is focused on creating, testing and growing a framework to support effective and responsible access – across borders – to sensitive health data for the treatment and diagnosis of rare diseases.
The data will be shared via a “federated data system”: a decentralized approach that allows different institutions to access each other’s data without that data ever leaving the organization it originated from. This is done via an application programming interface and strikes a balance between simply pooling data (posing security concerns) and limiting access completely.
The project is a collaboration between entities in the UK (Genomics England), Australia (Australian Genomics Health Alliance), Canada (Genomics4RD), and the US (Intermountain Healthcare).
Constructing a global PR campaign takes commitment to messaging, resources and creativity; it also needs collaboration across academia, industry and medicine, with no discipline taking dominance. It also needs to tap into the seldom-heard public voices from people who have had no interaction with this technology yet. It needs to seek out the views of indigenous peoples and representative members of the public, but also those who are fearful and afraid of the technology. Without this collaboration the conversations about genomics will remain disconnected, patchy and without a consistent beneficiary.
This is about all of us – not for profit, but for humankind.