Scienceploitation of new cell and gene therapies is rampant on LinkedIn, building the online presence of influencers at the expense of the full story
Regenerative medicine, the biomedical field that includes the development of cell and gene therapies, is arguably the most exciting research discipline. I often reflect on how lucky I am to have found myself in this area of science. I am always excited to learn and talk about new research and, better yet, people within and outside the field are enthralled to listen. Why? Because regenerative medicine is so cool! With the number of therapeutics getting approved for use continually increasing, the sector is transitioning from science fiction to reality.
Is the excitement of regenerative medicine leading to rampant “scienceploitation”?
But, this excitement is causing misinformation to spread rapidly across social media. I became concerned when press attention about my own work led to posts on LinkedIn that received over 1,200 likes and 100 reposts. First, I was concerned that these social media posts were accompanied by fake AI-generated images that profoundly exaggerate what science is currently capable of doing. Second, I was uncomfortable that these posts were stating the major details of the research, but leaving out the nuance, leading to the conclusions being greatly overstated.
This is not an isolated phenomenon. I have seen work done by researchers at the University of Florida go viral on LinkedIn with similar tactics. To avoid promoting these accounts, I am not linking to these LinkedIn posts, but they are easy to find. Clearly, the world is interested in the work done by regenerative medicine scientists; however, this appetite for information is leading to the spread of misinformation.
But any publicity is good publicity, right? Timothy Caulfield, a professor at the University of Alberta in the Faculty of Law, might conclude these LinkedIn profiles are building an online presence through a form of “scienceploitation” – a term he coined. They are taking advantage of other people’s interest in the science for their own benefit. There is also the frightening possibility that the underlying science of regenerative medicine studies are starting to get so complex that it is becoming difficult for even a scientist to properly assess whether the conclusions of the study, or the statements in a press release, adequately reflect the data being reported. All in all, I am starting to see people from many different groups of expertise sharing stories that are not entirely transparent, and I always wish I could meet up with Tim at a hipster coffee shop to get his perspective – although, he may just tell me that I should write something accurate as a counterbalance.
While studies may be exploited for online clout, the underlying studies are cool
Researchers at the University of Florida are developing an IGF1 gene therapy to reduce complications of fetal growth restriction. Image: public domain
So here I go: The University of Florida study by Davenport et al. is promising, but there is critical data that needs to be reported to demonstrate its safety. In brief, the Davenport et al. study is delivering the gene for insulin-like growth factor-1 (IGF1) to guinea pigs using nanoparticles. This study is a follow-up to a previous study by the same research group, and coincides with their other publication using these IGF1 nanoparticles in monkeys. These studies propose the use of these IGF1 nanoparticles to treat fetal growth restriction, which is broadly defined as fetal weight or abdominal circumference being below the 10th percentile for the gestational age. Fetal growth restriction can result in stillbirths, preterm births, and developmental abnormalities. The use of IGF1 to treat fetal growth restriction makes sense – it is a powerful growth factor and its deficiencies cause a lot of developmental issues. However, high levels of IGF1 also cause developmental issues.
Regenerative medicine studies may need to bring back an exhaustive limitations paragraph
I originally became aware of this series of studies through the aforementioned LinkedIn post, where it mentioned that the group was providing extra copies of IGF1 in their therapies. Immediately, I had my concerns because high levels of IGF1 are known to cause acromegaly, a disorder that causes excess growth in various parts of the body. Clinically, acromegaly is often diagnosed late in life, and not near birth.
While the study reports that there is no placentomegaly (i.e., the weight of the placenta was as expected throughout gestation), we do not know whether there are any long-term developmental consequences. While neither the press release, the LinkedIn post, nor two of the three research studies mention a concern with long-term effects, I was delighted to see that their study using monkeys in Molecular Human Reproduction indicates they plan to investigate long-term effects of these IGF1 nanoparticle therapies… kind of.
The study ends with the following statement: “Future studies are planned to expand upon these investigations [by allowing] treated pregnancies to proceed to term to comprehensively evaluate the long-term safety of treatment on fetal and placental health.” It is possible that everything would look normal at birth, and the consequences of manipulating IGF1 levels during gestation will not manifest for many years. Although, I suppose this all hinges on how targeted these IGF1 nanoparticles truly are, and whether the copies of the IGF1 gene could be detected elsewhere.
Certainly, IGF1 nanoparticles are an interesting approach to overcoming a medical problem, and the approach is very forward-thinking. However, we still have yet to see any gene therapy for pregnancy meet the regulators. It is not impossible to include pregnant women in drug studies, and so it is certainly not impossible to include pregnant women in gene therapy studies. But, unlike other gene therapies that are being developed, I suspect that the road for this one will be very long, and so we may not see approval for a human study for many years.
So what do I do, Tim Caulfield?
I continue to see LinkedIn influencers reporting on regenerative medicine studies, and these posts have much more social media interactions than anything put out by universities or the researchers themselves. I suspect that many of these interactions could be bots, but I do see people who I know personally interact with these influencers’ posts. If I interact with these posts, I am only feeding the algorithm to further promote these posts. Nevertheless, I know that real people are interacting with these posts; therefore, real people might start following my research, right?
It is a struggle to watch and contemplate. In my heart, I think the correct answer is the world would be better without these influencer posts on social media. While the information may not get shared as broadly, a post with misinformation does more harm than good. My research would be better to grow organically, one step at a time, with accurate messaging. What are your thoughts?
Tyler Wenzel
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