Not all scientists should be curing cancer
‘So, what do you work on?’
I was asked this question as a graduate student researcher at a science communication conference, making small talk with one of the panellists as we waited in line for lunch. Eager to demonstrate what I’d learned at the conference about defining jargon, I replied, ‘I work on developing a tool to evaluate treatments for glioblastoma multiforme, which is a really deadly type of brain cancer…’
‘I know what it is,’ she interrupted. ‘My niece died from it. It’s evil incarnate.’
In that moment, I was struck over the head with the reminder that I was working on something that affects real people. I knew about the severity of glioblastoma multiforme, that there are approximately 250,000 new cases each year and that the average lifespan upon diagnosis is 14.6 months. I had used these facts to motivate my research in a presentation at my funding agency’s site review and in a manuscript I was writing. But in the pursuit of my scientific goals, I had lost sight of the individuals behind the statistics.
Funding and publication requirements create pressure to find a compelling, health-related narrative for our work
The fact is that I was funded by a grant that specifically supports cancer research, and I was trying to publish in a journal that only accepts papers that have ‘significant broader impact’. For chemists working anywhere near the biological space, such funding and publication requirements create pressure to find a compelling, health-related narrative for our work. I once met a professor who spent 20 minutes animatedly talking about her lab’s bioinorganic coordination complexes. At the end of her passionate explanation of the Jahn-Teller effect and dioxygen intermediates, she added as an aside that she was exploring the use of her complexes in breast cancer therapy. ‘The NIH loves that,’ she remarked.
While applying one’s research to a disease may lead to new therapies, a primarily career-centric incentive for doing so can cause scientists to overlook the affected population. This sort of detachment from the realities of the disease can create inappropriate nonchalance in the way it is discussed in papers, presentations and even in the lunch line. Worse, the push for disease-based research applications can lead to overstated therapeutic claims. In the introduction and discussion sections of a paper, scientists can frame their work in a way that suggests a therapeutic application without needing data to support these statements. While this use of ‘spin’ is not widely recognised as a breach of research integrity, it can provide unsubstantiated hope to those seeking out treatment options.
That’s not to place all the blame on individuals – an academic career path is competitive, and we can only expect that scientists will do what they feel they must do in order to succeed. Addressing this issue therefore requires a larger systemic change within science regarding what type of research is deemed valuable.
To prevent scientists from feeling that they need to apply their work to a disease, we must increase publication and funding of basic research. While ideally all research will ultimately have a tangible, public-facing application, we shouldn’t force scientists to pin down the impact of their work prematurely. After all, without reports on the structure of DNA in 1953, we would not have the current developments in Crispr genome editing technology. I believe that greater support for basic research will create an environment in which investment in treating a disease drives research efforts, rather than one in which ongoing research is tailored to fit a certain condition to enhance its ‘significance’.
Approach everything you write, present and say about the disease with sensitivity
These systemic changes won’t happen overnight. But there are measures that all scientists can take in the meantime to ensure that the very goal of research – to advance scientific understanding in a way that improves people’s lives – is not lost among the quest to publish high-impact studies and secure funding.
We need to be more intentional about the language we use to describe our research to avoid overstating therapeutic claims. If the disease-related applications of your research have not been rigorously verified, make it clear that they are only speculative. Keep the people behind the numbers in mind by learning more about the disease than simply how it serves your research and seeking out stories of individuals who have been affected. And approach everything you write, present and say about the disease with sensitivity, as you never know who might be on the receiving end of your words.
Last summer, I met a friend of a friend whose brother had a rare disease that left him unable to talk or walk. She checks scientific publications every day for reports of a treatment. I urge researchers, peer reviewers, editors and funding agencies to keep this person in mind when sharing and evaluating disease-related research, and to question whether the hope the work will inevitably inspire in her is founded.