Last year at the Annual Meeting, Jennifer Adair, PhD, gave a beautiful talk. She started out by dissecting the title the Communications Committee had suggested for her, which was something like, “How to talk about gene therapy to a lay audience.” Although there were other changes she made, the one I remember was changing “a lay audience” to “people.” The reasoning, if I recall correctly, was that the original title divided people into us and them. The most effective communication, and the least resistance, happens when we can relate to each other. On the most fundamental level, we relate to each other through a common language. Semih Tareen, PhD, (aka @virusfantom) is a scientist and YouTuber who produces educational videos about viral gene therapy, primarily in Turkish. On one level, he translates information from English to Turkish, but he also translates from what can be a dry scientific idiom (but doesn’t have to be!) to a more colloquial language.
Explaining gene therapy to other audiences (which might include patients or physicians) boils down to a few key principles. First, you have to understand your audience’s concerns. Patients can be afraid of gene therapy because they are afraid their genes will be altered, that gene therapy is irreversible, and that it uses viruses, which most people know only in the context of things that make people sick. Second, when addressing these concerns, eliminate language that is alienating or that only people in the field will know. For example, in literature designed for physicians, viral vectors were described as “genetically modified, replication-incompetent self-inactivating viral vectors.” These are terms that are familiar to people who work in gene therapy but may not be to a wider audience. Explaining that the viral vectors are a “dead end” and that they can deliver a gene but can’t reproduce or infect other people will be more effective.
To address patients' concerns about gene therapy, Tareen suggests focusing on key points, (1) viruses are everywhere, and most of them don’t even make people sick, and (2) viral vectors are designed to contain only the “essential bits.” They can’t replicate or infect other people; this is ensured by extensive safety testing. He tells people that much of the human genome is composed of virus-like elements and that we rely on some of these virus-like elements for our own reproduction. Finally, we have to consider the risk/benefit ratio. With new designs and safety testing, the benefit to patients with serious diseases likely outweighs the risk.
While what we say and how we say it is important, how we present ourselves can also make communication easier. “I intentionally am a little over the top in my imagery,” Dr. Tareen says, “and part of that is to break down this hierarchy, this barrier between people who are trying to learn something and the scientific facts.” He shows a picture of himself in a shirt emblazoned with the name of a metal band, “I’m a huge metalhead. I dress like that to work every day. I do that because I think that image is important.”