In Defense of the Importance of Sickle Cell Clinical Trials

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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I work in the research and development field, an industry I didn’t know much about until I completed my first college degree. In this field, I’ve developed a vast understanding of how clinical trials work and why they are necessary to develop novel treatments for various illnesses and diseases. The ongoing pandemic has shown they’re important, with the rapid development of vaccines to combat COVID-19.

Being part of this industry means I am biased in favor of clinical trials and research participation. My job role is behind the scenes in the development stage of clinical trials that will hopefully make life-changing discoveries. However, as a sickle cell patient, I’d always been reluctant to participate in a clinical trial.

It took me a while to be comfortable with the thought of participating. When I was younger, I learned to be cautious of clinical trials, hoping someone else would do them instead. I remember my mother saying that the compensation from participating in a clinical trial wouldn’t be enough to cover my funeral costs.

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This statement was a bleak viewpoint; however, history has shown us terrible examples of poorly done research. For example, the Tuskegee experiment is one of the most infamous experiments in modern history. The violation and mistreatment of this study’s participants are poignant reminders of the mistreatment of Black people like me in healthcare settings.

Despite the numerous clinical trials that have had rigorous precautions, ethics panels, and governing bodies, bad memories last longer than good ones. It’s fair to say that several factors were hindering my desire to take part in clinical research; however, in addition to my career, the following factors helped change my mind.

Understanding the process

Understanding how drug development works alleviated my anxiety about participating in clinical trials. Before a drug is given to a research participant, there is extensive safety, laboratory, and animal testing. I’d always pictured a crazy scientist keen to test on people right away. However, it usually takes years for a novel drug to make it to the clinical trial stage, where human subjects are involved.

Understanding what is required of me

Before I took part in my first clinical trial, I asked lots of questions that at the time probably seemed silly, all in the hope of easing my nerves. My consultant was patient with me and explained the drug’s potential risks and side effects. I was also not obligated to participate and could leave the trial if I felt that it negatively affected my well-being.

Understanding the bigger picture

Without research participants, clinical research doesn’t happen. In my job role, I see novel studies with the best intentions, but not enough recruits to prove the treatment is effective. The minimal number of treatment options available here in the United Kingdom demonstrates to me that there isn’t enough research on sickle cell. So doing my part by participating in clinical trials will hopefully encourage more research to be done.

Why did you decide to take part in a clinical trial? Or are you still deciding? Please share in the comments below.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.


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