Vivienne Parry, Writer/Broadcaster & Genomics England
We need to earn and retain trust amongst ethnic minorities by putting them at the heart of decision making about how their genome data is used and what research is important to their communities.
When someone says ‘Trust me’ in a movie, we all know what’s going to happen next. A catastrophic betrayal of trust even as we are all shouting at the screen, ‘No, don’t do it’. We normally only put our trust in people close to us and in those we perceive as having our interests at heart, for instance, health professionals. Trusting someone is rarely an instant thing. It takes time during which the person or organisation has to prove that they are worthy of our trust.
And there are some organisations that we instinctively put in the ‘be wary’ folder. States, big corporations and the Inland Revenue where the nagging suspicion that they are not necessarily on our side inhibits trust.
However, distrust is categorically not a bad thing. Horses, diving off bridges, men offering 8% returns. I am thoroughly distrustful of all three. The distrust is based on personal experience. I was knocked over by a horse as a small child. As a teenager, I came within a whisker of paraplegia, diving into three feet of water to impress a boy and as an adult, a smooth talking bloke in a suit nearly robbed me of my entire pension. Distrust of horses, diving off bridges and oily pension salesmen is a powerful means of preventing the same thing happening to me again.
Distrust is a critical piece of armour, honed over millennia, by evolution which protects us from potential harm. It is in the same family of protectors as visceral human fears of heights, snakes and deep water. Important to our survival, entirely natural and shaped by direct experience either personal or amongst those with whom we identify.
So for me, it is entirely logical and understandable, given the acute harm caused by experimentation in the past that many black people mistrust medical research. It doesn’t matter that Tuskegee, the so called ‘medical experiment’ in the US in which black prisoners with syphilis were left untreated, began nearly a century ago. It is still recent history and in fact, more recent than you might think because shamefully it did not finally end until the 1970s.
Similarly, people who have been consistently left out of important beneficial research studies for decades and who have experienced sub-standard medical care have every reason to distrust the motives of those who now say that research is in their best interest. Another area of distrust relates to the retention of DNA, especially given the disproportionate number of black men on the national DNA database, or of human tissue – think of Henrietta Lacks. And if you say research in some communities, the word ‘guinea pig’ or ‘lab rat’ is quickly voiced. This much we already knew.
Genomics England and Wellcome Connecting Science commissioned research from Maslansky, a company that uses scientifically validated sentiment measures relating to the use of words and language, to help us understand how to present the benefits of genomics, and what language we should be using. The results made us realise just what a mountain we have yet to climb.
Approaches based on benefits simply did not work. That’s certainly not because people did not want to help others – far from it. But the point was that they were not hearing these appeals. Maslansky’s conclusions were that we did not have permission to lead with the benefits of genomics to communities and families.
So we need to rethink, regroup and above all to be humble. No conversation about genomics should begin without acknowledging the mistakes of the past that have led to a distrust which is founded in reality, and is valid and important. And we must always stress that participation is a choice and that people can say no, without blame, if they want to.
But back to trust. What do we have to do to be seen as trustworthy? For me, one priority is to involve communities in firstly setting the research agenda – for example, what conditions particularly affect them, or folks in their country of heritage, for which they would like answers. The second priority is that they must also be involved in the governance of their data. Who should be allowed to access it and for what purpose? I think it is even more powerful if the people making these decisions are people with skin in the game, whose data is part of the dataset, for why should they have decisions made on their behalf, even by members of their own community?
There is another issue that makes trust difficult. There are many myths about DNA and that should not surprise us. Soon after the first draft of the human genome sequence, a TV show was launched. To date it has run to 347 episodes plus a couple of movies. CSI – a show based in fiction – is where most of us have got our knowledge of DNA. And there are hundreds of other dystopian shows and movies about the use of genetic information, from Gattaca to the latest Bond film.
It’s easy to extrapolate what you’ve seen believing it to be the truth. And here we come to mistrust, the scourge of our era. Fuelled by half truths, by outright falsehoods and a toxic mix of competing personal, political and financial agendas, and rocket boosted by the algorithms of social media, everyone needs to help counteract it. But this is not about making people feel stupid for having believed it. Rather it is about patient answering of questions, good humour under extreme pressure and respect for other people’s views, no matter how much you disagree with them and even better if it is trusted members of your own community who are doing this.We need to acknowledge the past and the wrongs that must be righted. Only then can we begin to move forward by putting our trust in the good sense of communities.
Vivienne Parry is writer and broadcaster as well as scientist by training. She hosts medical programmes for BBC Radio 4, writes widely on health, presents films, facilitates conferences and trains young researchers. She is also Head of Public Engagement at Genomics England which delivered the 100,000 Genomes Project. She also sits on the board of UK Research & Innovation which is responsible for the strategic spend of the UK’s £7 billion research budget.