Genomics, Public Trust and Engagement

“Genomics” – a scientific term previously considered most relevant to scientific research, is now a mainstream feature within clinical practice and intrinsic to improving public health.

As such, the fundamentals of genomics are becoming increasingly more relevant to society, however, it seems society could not be more disengaged.

According to the British Science Association, Kings College London (2016):-

75% of the British public (46 million people) are either:

• Not interested in science
• will make no effort to engage with science

But why does this matter? What does this mean for the impact of genomics?

Genomic techniques are at the forefront of improving global human health, making genomics powerfully transformative to modern medicine and healthcare.

Genomics offers revolutionary benefits, with respect to:

• The prediction of diseases manifestation
• The diagnosis and characterisation of all disease
• The development of drugs and therapies to manage disease
• The personalisation of medicine, tailored to individual needs

However, for the benefits of genomics to reach their full potential, we need to find creative approaches to engage the public with the science, and build their trust to share their vital data.

Genomics cannot be completely effective, without the cultivation of large scale public genetic databases, acquired from globally diverse populations.

Here lies the problem – if the public are disengaged with the science, the opportunities to inform and build trust in data sharing do not exist.

This is why it has become paramount that we tackle this issue of ‘socialising the genome’ at this crucial juncture, before we risk jeopardising the future success of genomics, and subsequently squandering the impact of years of genomic research.

How do we begin to ‘socialise the genome’?

To establish the right approach to talk to the public about genomics, we need to understand current thinking around the concept of data sharing, and the perceived relevance of genomic medicine.

This was the catalyst for the largest social science study on public attitudes on genomic data sharing – “Your DNA, Your Say” – spearheaded by Wellcome Connecting Science Society and Ethics Research, led by Professor Anna Middleton.

Involving 37,000 people, from across 22 countries, delivered in 16 languages, this huge survey delivered some very interesting insight into public attitudes and trust:

• “62% of the populations surveyed said they were unfamiliar with the terms DNA, genetics, and genomics”
• “53% of the populations surveyed said they were unwilling to donate their data for use by multiple users, e.g. doctors and researchers”
• Those surveyed felt a distinct need to understand the need and benefits of someone asking for their data, before they would be willing to share.

This is startling evidence, highlighting that public trust in sharing data and health information is low. There is clearly a disconnect between the world of genomics and the public, and not enough is being done to target mass public audiences with the right messaging, to educate them on the benefits of sharing their personal genetic information.

The collective genomics industry has already invested in extensive communications and public engagement strategies around the world, over many years. However, these strategies appear to have predominantly resonated with those who already have an awareness about genomics, as opposed to those who currently have no concept of how it might one day impact them.

“So much genetic testing has been done around the world, that even if you’ve never personally had a test, you’ll be related to someone who has. Ethics and genetics are now relevant to all of us.”

Professor Anna Middleton, Head of Wellcome Connecting Science Society and Ethics Research.

This activity has included the translation of science into press releases for mainstream media, and delivery of public events and resources targeted at different community groups. However, it’s clear that these strategies rely on some level of prior interest or curiosity about genomics. What these strategies fail to do, is foster engagement from broad public audiences by finding innovative ways to connect and ignite a curiosity.

As such, those who are the hardest to reach, yet also the most volatile (as they have no vested interest in wanting to understand the benefits of genomics), are overlooked at our peril. Failure to find ways to specifically engage with these disconnected population’s significantly limits the possibilities for societal benefits of genomics.

More needs to be done to find innovative and engaging ways to teach the public about genomics; to make it less daunting, less ambiguous! We need to find a place for genomics within popular culture to make it more accessible and easier to digest. It needs to find an organic place within everyday discussion; whether that is at home with family, or down the pub with friends.

Choosing the right language and mediums to amply targeted messaging will play an integral role in communicating with resonance; but, we can only achieve resonance by earning public trust first. This means opening up the discussion about “the deal” – the partnership between genomics and the public.

“We have to step outside of our bubble in the genomics world…..  We have to upgrade how we are talking and bring people with us on our journey.”

Professor Anna Middleton, Head of Wellcome Connecting Science Society and Ethics Research.

Social research, commissioned by Wellcome Connecting Science and Genomics England tells us that we in the genomics space do not yet have the authority to lead with the benefits of data sharing, we are not yet worthy of public trust. Raising awareness of the partnership, along with optimised language and narrative to demonstrate the power the public has to impact policymaking, will be key to building this foundation of trust.

However, if genomics is truly going to find a place in the hearts and minds of the public, collaboration with the arts world will be defining. We need to push to find ways to bring genomics to film, art, theatre, poetry, literature, soap operas, manga comics, etc.

To understand more about who is disconnected and why, you are invited to watch this webinar hosted by Public Policy Projects, on ‘Socialising the Genome: Genomics, public trust and engagement.

Hear More from Professor Anna Middleton on the results from ‘Your DNA, Your Say’, and from Vivienne Parry, Genomics England, on the importance of finding “new ways to engage with a disengaged public”.

You will also hear more about the work being carried out in collaboration with the renowned marketing communication agency, Ketchum, and linguist specialists, Maslansky, to explore a new narrative to help build a bridge with the public, and scale up existing communications efforts.

 

Read more about socialising the genome in this article on Medium.