COVID-19, genomics and the ordinary language of extraordinary things

Genomics. Sequencing. Tracking. These are the buzzwords within COVID-19 science at the moment – describing how we map the DNA construction of the virus, how it’s mutating and where different strains are appearing.

Scientists from the Wellcome Genome Campus are involved in the COVID-19 Genomics UK Consortium that tracks the outbreak for the NHS and government. Here ‘genome sequencing’ of the virus will inform management of how it spreads as well as providing key information for vaccine development.

The language that permeates campus conversation is, as you might imagine, dense with scientific phrasing and framing wholly alien to the average person. This is to be expected but as the COVID-19 pandemic has shown, there are times when the brutal rationality and integrity of scientific and academic language and framing must cross the great divide into the everyday lives – and language – of ordinary people.

People have the right to be spoken to as adults and suitably informed about any issue of great and direct importance in their lives. But, beyond and below the general topic line, to what degree does the science itself need to be ‘explained’ in ordinary and everyday terms?

Taking the questions further:

• What is the right balance between enough and too much when talking about genomics and our DNA with the person in the street?
• Do we need to learn more about genomics and the benefits it can bring to our lives on a daily basis?
• Or do we just need to unlearn the myths that have multiplied around it: the horror stories, conspiracy theories and fantastical folklore of mutant science?

To answer these with any reasonable clarity we must explore two dimensions: those of desire – our want to know more to improve our lot – and utility – our need to know more to improve our lot. Whether we want or need to know more is key to having the right conversation.

In the instance of COVID a good example of want vs. need lies in the matter of R=1. A mass of the populous were more than happy to accept Chris Whitty’s use of the concept of R reaching below 1 as a wholly meaningful metric from a trusted source. They did not desire to know more. They accepted it without needing to know what R=1 actually meant. For the curious out there, ‘R’ is the rate at which the virus spreads, so an R=1 means one person spreads the virus to only one other person.

Only once we understand the context in which we are having the conversation we can we apply ourselves to finding out how to translate the science in ways that are meaningful for people. To do that we need to go wading into the shallows of language, storytelling and myths and the nature of how culture and society influence language.

Slang, Vernaculars, Trivia, Idioms, Catch Phrases: these are the colour, spice and flavouring of ordinary conversation. These are the ways in which we make formal, rational, structured language more personal, emotional, relevant and meaningful to us and the lives we lead. It is here that we find the raw materials to build the bridge between the science and the listener.

We would argue it’s time to use the COVID stories as a springboard to a deeper understanding of the science, as the application and relevance of genomic technology is relevant to all of us, even if we never have any level of personal testing ourselves.

The reason is that the DNA sequence (the barcode, the ID number, the profile) is shared between us. My virus might be related to yours (ergo, did you get yours from me?) and you cope with it better than me (do you have some genetic advantage compared to me?). Answers to these questions are likely to be unravelled through scientific research in genomics and such scientists working on this should be considered key workers in resolving the global crisis.

Genomics – the study of genes and their functions – 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 them 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?

It is likely that some of us have already had a form of genomic test already, maybe 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 with implications for other relatives. For others, the situation may be less intense or even recreational, meaning less care will be given to the science that exists behind those tests – or consideration of the consequences.

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.

This means work is needed to find a language that is both memorable and resonates with everyone – beyond the individual, to the family and then to broader society. 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 publics, is to open up the 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 publics who have never given any thought to the subject.

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 the 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 be representative of different experiences and social perspectives.

Constructing a global PR campaign takes commitment to the messaging, resources and creativity; it also needs collaboration across academia, industry and medicine, with no discipline taking dominance – or trying to ‘own’ the conversation or the most effective version of it.

It needs to tap into the seldom-heard public voices from people who have had no interaction with the technology yet. It should seek out the views of indigenous peoples and representative publics as well as 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.

Prof Anna Middleton, Head of Society and Ethics Research, Wellcome Genome Campus Connecting Science, Cambridge, UK; Faculty of Education, University of Cambridge

Julian Borra is a Creative Writer and Strategist working across the Creative Communications industry, he is also a New York times Bestselling author of Liferider; he collaborated with Anna on the Socialising the Genome Project at the Wellcome Genome Campus

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