Information is powerful. It can influence beliefs and behaviors. Conspiracy theories, like those about Bigfoot and unidentified flying objects (UFOs), are a form of information that attempts to make sense of a phenomena experienced or observed.
Although conspiracies are often dismissed as irrational and insignificant, in recent years, conspiracy theories have permeated social media with claims of alternative facts and fake news challenging news reports.
Health and medicine have been the subject of several conspiracies. A 2013 online survey identified the following as the two most commonly known health-related conspiracies: 1) Doctors and the government want children to be vaccinated despite knowing that vaccines cause autism; and 2) the Food and Drug Administration is under pressure from drug companies to withhold a natural cure for cancer.
If the survey was taken today, I suspect theories about genomics would make the list. Popularized by direct-to-consumer companies, individuals now have access to DNA sequencing services outside of a clinical setting, which is changing the medical landscape and giving rise to new conspiracies.
I’ve seen this first hand. During the public deliberations for the project I work on, Building the Medical Information Commons, a couple of the deliberants expressed conspiracy-like concerns when discussing DNA data sharing. I was baffled. Then I stumbled onto DNA conspiracies videos on YouTube.
Some videos suggest the purpose of DNA collection is to clone humans; others fuel speculations about malicious agendas carried out by direct-to-consumer DNA testing companies and the U.S. government.
With scientific advances like CRISPR drawing a tenuous line between science fiction and reality, it’s unsurprising people construct narratives to understand these advances. Studies on conspiracy believers suggest that conspiracies appeal to people’s desires to make sense of events, to feel in control and safe, and preserve a certain image of themselves and people like them.
Furthermore, public health scholars have suggested that the “publish or perish” culture in academia have led academics to mostly disseminate information amongst themselves, allowing non-experts (like the YouTubers) to fill in the communication gap and misinform the public.
It can be argued that conspiracies are believed by a small group of people and therefore should be ignored. However, conspiracy theories are not just expressed by a minority. Conspiracies related to biotechnology and health have been raised by mainstream television and even propagated as a political tool.
Also, the history of the anti-vaccine movement should serve as a cautionary tale. In 1998, The Lancet published an article that linked the measles-mumps-rubella (MMR) vaccine to autism. That article has been discredited by studies and even retracted from The Lancet. Yet, to this day, distrust of vaccines and medical professionals continues to fuel the anti-vaccination movement.
Not vaccinating can have negative consequences, both to the unvaccinated person and to the population. So far in 2018, there have been nine reported measles outbreaks in the United States with the majority of cases being unvaccinated individuals.
Dismissing DNA conspiracy theories is a missed opportunity to correctly inform the public about DNA-related biomedical research and data resources, and prevent the formation of an “anti-genomics” movement.
The success of data resources and biomedical research, that include DNA data, depends on the participation of the public. Therefore, the creators of data resources should recognize and address DNA conspiracy theories.
In addition, the communication lines with the public should be further enhanced to promote transparency and build trust. Once a conspiracy message plants doubt and fear about the intentions of DNA data collection and research, like with vaccines, it may be difficult to undo the effect of the message.