I have recently been transitioning from “basic” science research to science communication. Why? Because there is a great disparity in what the public, policy makers, and even clinicians, know and think about research, and what the researchers know. I believe as researchers and academics, it is our responsibility to inform the public – not just our colleagues – about our work and findings. Every time I read or watch something that seems to highlight this disparity in knowledge and understanding, I become more motivated to do what I can to fill the knowledge gap. I’m going to share with you my most recent motivator, in hopes of inspiring others to be more involved in communication (New Year’s resolution, anyone?).
Over the holidays, I finally got around to reading The Immortal Life of Henrietta Lacks – a book detailing the life of the woman behind the HeLa (cervical cancer) cell line. The book focused largely on the humanity behind the HeLa cells, but as a former scientist, I found myself wanting to know more about the science, such as how these cells were cultured (they were the first long-term human cell culture), and the many medical breakthroughs (e.g. polio vaccine) to which they contributed. However, I would not consider this a fault. In fact, the human story is one of the book’s strengths, as I was forced to consider social issues in science, some old and outdated, some more relevant than ever.
Keeping in mind that I am a Canadian born in the late-80s, I was shocked by the lack of informed consent, the differential treatment of patients based on their skin colour, the disclosure of patient identity – but most of all, by the lack of information shared with the Lacks family regarding the use of Henrietta’s cells, leading to high levels of ignorance and fear.
The book was filled with examples of misconceptions held by the family. A few stand-outs include how one of Henrietta’s daughters thought the drug and radiation studies done on HeLa cells were being done on her mother, leaving her wondering about the pain her mother must be feeling; or how when the family saw reports of HeLa cell cloning, they assumed there were thousands of Henriettas out there somewhere. Even something as simple as the word ‘cell’ was misunderstood as a reference to a prison cell – those were the only cells with which the family was familiar, as highlighted in a podcast interview with author Rebecca Skloot.
As researchers, we often (read: are required to) dehumanize our specimens, and while fulfilling our research requirements, we often neglect our other responsibilities: communicating our research results to the greatest stakeholders – the study participants and the public.
Having worked in a lab that collected and used tissue samples from patients, I’ve definitely wondered how many of those patients would know and understand the results of their contributions. Yes, I’ve communicated my work through peer-review, conferences, and lay abstracts for granting agencies – but how many people have access to these things? Should we not capitalize on the resources that people do use, such as social media, blogs, and news reports? Should we have some sort of forum where study participants can actively follow study progress and outcomes? If the Lacks family is any indication, there definitely is a desire to know, and a strong sense of pride in having contributed to science.
While access to education has greatly improved public understanding of science, I bet you’d be hard-pressed to find a layman who readily knew or could conceive the difference between cellular clones and cloning on the organism level, or why this work even matters. That’s where researchers need to come in, by speaking to the public – not past them.
Communication of scientific findings to the public is not a new issue – I’m certainly not the first to suggest we revisit our responsibilities to the public. Fellow Signals’ blogger Angela McDonald’s most recent post talks about the necessity of researchers to communicate their research quickly and clearly to a variety of audiences, and implores the public to hold researchers accountable for effective communication. I must say I agree: we need to extend our communication beyond our inner circle of colleagues, and fill the knowledge gap(s). After all, an educated and aware public is definitely more favourable towards scientific research and progress than one defined by ignorance and fear.
Sara M. Nolte
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