Stem Cells Have a Public Image Problem
The field has made immense scientific progress in the past two decades, but public opinion and understanding have been somewhat stagnant
“Stem cells are illegal in Canada, right?” Despite my relatively short time as a science communicator in the stem cell field, I have heard that question and variations of it many times. Often, the questions come from a place of good intention. Nearly always, the questions are due to a fundamental misunderstanding of what stem cells are or where the field currently is.
In reality, stem cells are one of the most promising tools helping to usher in the biotech revolution. There’s a palpable intellectual frenzy among researchers about new stem cell-related advancements. But this hasn’t carried over to many members of the public.
A 2010 study of undergraduate students pursuing non-science majors at a public U.S. university found that, after participating in an introductory biotechnology course, many students continued to misunderstand what stem cells are or how they work. Unfortunately, apart from this study, few others have been conducted that explore public knowledge of the stem cell field. Those that have been done were mostly published in the 2000s, before or soon after induced pluripotent stem cells (iPSCs) were discovered.
iPSCs are cells that come from a patient’s skin or blood sample and, through a process called reprogramming, are coaxed to become a type of stem cell that can turn into any of the cells in our body. These cells can then be used to study drugs that could help that specific patient or to create patient-specific treatments.
Though embryonic stem cells remain the gold standard in this field, iPSCs are now a researcher favorite. Looking at clinical trials, iPSCs are used more so than embryonic stem cells in observational clinical trials—clinical trials where an experimental treatment isn’t directly administered—as of 2019.
Similarly, the California Institute for Regenerative Medicine, a state agency funding stem cell research, has 61 active grants supporting projects involving iPSCs compared to 26 involving embryonic stem cells (with some projects using both). Biologically, iPSCs perform similarly to embryonic stem cells when it comes to specializing.
Despite this, we sadly don’t know what the public knows about stem cells, especially iPSCs. That in itself is telling. Embryonic stem cells are the stem cells most people think of when the topic of stem cells emerges, and research on public attitudes and knowledge of this type of stem cells is more abundant.
This issue may seem insignificant at first. After all, most people don’t know the details of every topic scientists are researching, nor should they be expected to. But this goes beyond a lack of understanding. Many misunderstand the stem cell field and have little trust in it as a result, creating a disfigured and inaccurate image of stem cells in the public consciousness.
If public trust or understanding is entirely missing or misplaced, the important research being done by scientists today will struggle to find a footing as part of the future of medicine. As Derek Thompson writes in The Atlantic: “Invention is easily overrated, and implementation is often underrated.”
Implementation isn’t possible without the support of the public. For stem cell therapies to revolutionize medicine, people must be excited to use and support said therapies. But the public can’t support something they don’t understand.
The stem cell field’s public misfortune began in earnest in the 1990s. In 1994, an expert panel put together by former Director of The National Institutes of Health, Harold E. Varmus, published a report on federal funding of embryo research. The panel recommended funding embryo research, including for the creation of embryos with the intent to use them for research. But former President Clinton publicly rejected that claim.
Further damaging stem cells’ image, in 1996, the Dickey-Wicker amendment came into effect, preventing the use of federal funds for the creation of human embryos for research or any research where human embryos are destroyed or discarded. The amendment remains in effect today. The final nail in the coffin came in 2001, when former President George W. Bush stated that no new stem cell lines could be created using public funding.
Soon enough, scientists found work-arounds—private funding for the creation of stem cell lines followed by the use of public funding for studying them, as well as state- or philanthropy-supported efforts like California’s Proposition 71 and the New York Stem Cell Foundation have been helping this research thrive since. But the damage was done. The exciting science was just beginning. Yet in many ways, stem cells had lost in the court of public opinion.
This may seem like the end of the story but, in the grand scheme of things, the stem cell field is young. Looking at gene editing, a slightly older field of science, offers some lessons, particularly with regard to media attention. The stem cell field lost a lot of public trust through highly publicized, negative events. To regain that trust and foster a greater understanding of the field, the media may, in fact, be helpful. In a survey of U.S. adults, researchers found that news consumption was positively correlated with support for gene editing. This is likely because gene editing (specifically CRISPR) is portrayed positively in American and Canadian media.
In a somewhat surprising twist, however, after the negativity in the press in the 1990s and 2000s, the stem cell field may be taking things too far in the opposite direction. Media coverage of stem cell biology, including athletes receiving unapproved and unproven stem cell treatments, has been overwhelmingly positive, with little nuance, according to multiple analyses. Though it’s critical to highlight the benefits of stem cells and the great leaps and bounds being made, this must be offset with realistic obstacles, of which there are many.
For instance, the large majority of news articles mentioning stem cell therapies between 2010 and 2013 made lofty promises as to when these therapies would become available for the public. They often cited unrealistic timelines like stating that these therapies would be available in five to ten years, an unfeasible feat that didn’t come to fruition.
Martin Pera, a long-time stem cell researcher who holds the position of editor-in-chief at Stem Cell Reports among others, noted that when answering questions about when cures using stem cells will become available, scientists must be cautious about their responses and ground their claims in evidence.
On top of these unrealistic promises, the media’s fixation on embryonic stem cells persists. The 2010 to 2013 analysis found that there was a stronger focus on embryonic stem cells as opposed to iPSCs in news articles, even though iPSCs were well-established in the field by this point.
A more accurate reflection of the current stem cell research landscape, including limitations, science-backed timelines as to when therapies are coming, and discussions of all types of stem cells, would be beneficial to public knowledge and understanding of stem cells. This isn’t to say that the benefits of research shouldn’t be highlighted. Pera explained that in the early days of in vitro fertilization (IVF), there were many opponents. Yet when the myriad benefits of IVF became clear over time, many of their objections faded away.
Involving the public in discussions of science is another approach that may help the stem cell field. Long gone are the days when the public deferred any and all mildly science-related quandaries to scientists, and scientists alone — and this is fantastic. Research has found that involving the public through deliberation and engagement efforts not only makes for richer discussions and more complete considerations of the effects of research, but also makes the public more accepting of other viewpoints.
Most critically for the stem cell field, public deliberation has been shown to build trust between participants and policymakers. Though this doesn’t extend directly to scientists, it’s likely participants will more greatly trust the stem cell field as a whole after public discussions. Currently, initiatives such as public forums about stem cells exist. But greater access to these initiatives as well as a greater number of them would be incredibly beneficial for the field.
In parallel, young science trainees and long-time researchers alike should embrace science communication as a part of their role. As Pera put it, “For whom the bell tolls, it tolls for thee,” meaning the scientific community needs to “train young scientists that this engagement is part of their job.”
Stem cell research is moving forward at breakneck speed and scientists are pushing the limits of what was previously possible nearly every day. So no, stem cells are not illegal in Canada. It’s finally time the public understood that.
