Scientific research and the sufferer

Scientific research into a particular disease is often conducted in what seems like an abstract manner, impenetrable to the sufferer of the disease. This is partly due to the complexity of the disease and the science needed to understand it. Another important factor is in research the state of knowledge fluctuates and is rigorously debated until only much later is a consensus reached. Also, research is predicated on there being unknowns (why else research them?), meaning that science, by its very nature, currently doesn’t hold all the answers. This can be very frustrating to the sufferer who wants concrete answers to pin their hopes to.

It is also due to how the science industry works. Scientific research is expensive to conduct; not in terms of scientist’s wages (which are relatively low) but in terms of very high reagent and equipment costs. The strange payoff for the many hours in the lab and the billions of pounds spent is the prestige and glory of getting your work published in a “good” journal (i.e. well referenced by other scientists). The editors of such journals have immense power in science; their decision to publish can make or break the career of a scientist. This is because the next round of funding to pay for research is dependent on reputation, which is mainly founded on the number of “good” papers a scientist has.

In the scramble for publications and the competition for limited funding, the sufferer can become a vague presence. No doubt the intentions of the scientist are founded on advancing knowledge to alleviate suffering. Research is hard, precarious work; a scientist also has to be lucky. But the day to day business of research is engaged in generating papers to justify the next round of funding. It is an open question how compatible the intention and actual business of science is.

Sufferers want the “coal” produced by research to stoke their fires of hope while researchers are busy at the dark coalface. It is important for the two to meet. Sufferers should engage with research and hold researchers to account. Researchers should keep in mind that their work describes the suffering of real people.