In research, let’s listen before we speak

BY Alice Quinton

(Winner of The Nucleus writing competition 2021)

“Let the Science speak for itself” – this was the statement made by a prominent Professor during a Q&A session I recently attended. The researcher argued that research should always remain objective and that our job, as scientists, is to ignore the political and social climate we are releasing our work into, thus allowing the data to tell the truth. We do not bear the responsibility for how our discoveries will be interpreted by the outside world. By staying in our scientific bubble we avoid the influence of bias and therefore won’t waste time worrying about what people will say on Twitter.

This is all very well, but money, politics, and public opinion are embedded within science, research and development from the offset. Research in health sciences is generally funded by government investment or charitable organisations. The National Institute for Health Research invests £1 billion of government money every year. In 2020, the Association of Medical Research Charities (representing 150 charities including Marie Curie and Cancer Research UK) invested a total of £1.7 billion. Reliance on donations and government spending means trends in medical research funding are irrevocably linked to the priorities of the public, and to those with political and financial power. Given that the majority of studies are conceived from this web of exterior elements, it is redundant and I believe, detrimental to ignore the realities of the world our scientific findings are born into. Medical science has a tragic and troubled history of getting this wrong; with research directly or indirectly causing harm.

“Let the science speak for itself.”

A recent example of a scientific PR disaster is the hugely unpopular Spectrum 10K study; the UK’s largest study of autistic people with £3 million in funding from the Wellcome Trust to understand genetic and environmental factors contributing to autistic individuals’ wellbeing. Spectrum 10K has been widely criticised for failing to effectively communicate the goals of the genetic data collection which, combined with an increasingly right-wing political climate and a lack of trust in the lead researchers, caused legitimate concerns regarding eugenics amongst the autistic community. This resulted in a Twitter storm, a slow response from Spectrum 10K, a well organised boycott, and the eventual pausing of study recruitment.

Spectrum 10K is a research study seeking to understand more about the genetic basis of Autism

Perhaps the saddest part of this waste of resources, loss of community trust, and a great deal of distress caused, is that this was all completely avoidable. It is not a new concept that effective science communication, and a receptive attitude to the concerns of the target population, makes for translatable studies and fosters better relationships with communities. Although efforts have been made in both academia and industry to rebuild trust and make proactive patient and public involvement (PPI) a staple of research, the majority of PPI is conducted when project funding has already been secured, thus limiting it’s capacity to contribute to the study design. 

The Emerging Minds research network not only tackles research challenges that have been highlighted by young people, alongside their families, policy makers, and clinicians, but their approach to mental health research incorporates and prioritises the opinions of those with lived experience at all stages. For example, a Bristol-based study researching experiences and mental health impact of racially motivated bullying is being designed with the consultation of young people and local communities, to ensure the outcome is deliverable and sensitive support for classrooms.

Similarly, the Psychosis Metabolic Risk Calculator (PsyMetPiC) project was actively developed alongside young people with lived experience to ensure they would be comfortable disclosing the information their algorithm asks for, and developed effective ways to communicate the results. The researchers recognised there was little point in developing a predictive tool if their target audience wouldn’t actually use it.

Taking the time to consider both the socio-political context and the opinions of the populations our work impacts at all stages of research not only mitigates potential harm caused but also enriches the utility of our work.

Ultimately, science can’t speak for itself. It is our responsibility as scientists to consider, in our silence, who it is that will be doing the talking and what it is that they will be saying.

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