How we talk about science matters: A bioethicist’s view on controversial research and science policy
by Caitlin Nichols
cover image by Rebecca Clements
Modern advances in stem cell technology and genetic engineering are bringing the stuff of science fiction into reality, presenting remarkable promise for expanding knowledge and treating disease. However, these developments also arouse ethical concerns that must be considered when deciding if and how to implement them. One striking example of this relationship between biological advancement and bioethics is that of chimera research, the practice of placing human stem cells in embryos of other animals to be used for medical research. In September 2015, the National Institutes of Health (NIH) placed a moratorium, or hold, on federal funding for this kind of research until the agency had more time to consider the field’s scientific and ethical implications. Then in August 2016, the NIH proposed a new policy allowing funding for the research to continue, but with specific safeguards to prevent its unethical use.
We wanted to understand more about this regulation process: Why are some scientific issues so controversial? How do lawmakers, scientists, and ethicists work together to create policies regulating these issues? What role does the public play in all this? To find answers to these questions, we sat down with an expert in stem cell research regulation, Melissa J. Lopes, a bioethicist and Senior Research Compliance Officer at Harvard University. In this role, Ms. Lopes directs Harvard’s Embryonic Stem Cell Research Oversight (ESCRO) Committee, which “provides ethical oversight and review of stem cell research protocols.” Ms. Lopes also develops, reviews, and implements policies affecting research programs across the University.
Q: What is the recipe for a bioethical issue?
A: When one considers the bioethical issues that have arisen lately, like right-to-die issues and stem cell research, they appear to be issues where our scientific knowledge has advanced to the point of enabling us to do something, but that something broaches a moral or religious line for people where they wonder, “Is this still human?” or “Are we tampering with nature?” When you think about it, all of science is tampering with nature to some extent, but it’s only these certain issues that cause individuals to pause and wonder if all this tampering broaches a moral or religious line.
Q: Chimera research, like stem cell research generally, can be considered very controversial. Why is that?
A: When the general public thinks of a chimera, they think of a mythical half-human, half-animal beast. In actuality, the research may simply involve the injection of a few human cells into a lab mouse in a cage. But, even then, I think the concern people have is that the researcher may leave for the night, and come back the next morning to find the mouse reading the newspaper and saying “Oh, look how well the Red Sox did last night!” The fear is that these animals will develop human qualities, and that raises other types of concerns. If they have human qualities, can you continue to use them in research? Are you creating a new breed of creature? I think the general concerns from the public can be distilled into a fear that chimera research may result in something out of a horror movie.
Participating in the discussions around some of these research activities with Harvard’s ESCRO Committee and listening to the scientists explain the science has been very enlightening. Our committee is half scientists, half bioethicists, and I think that’s a really good balance. The bioethicists shed light on the perspective of the layperson and what he or she would think about this research. But it’s also beneficial to have the scientists engage with the bioethicists, because sometimes what the bioethicists and the public might be concerned about is something that is not scientifically possible based on what we know about human and animal development and the distinctions between the two.
It would be nice if we could get that kind of discussion out into the community as well. That kind of awareness would be helpful for the public, because they would be more informed, and for the scientists, because it could ensure greater trust in the scientific process.
Q: The NIH moratorium put limitations on public funding for chimera research, but privately funded research remained unregulated. Can you help us understand why some scientists were concerned about the moratorium even though chimera research itself was not being prohibited?
A: I think the concern about the moratorium centered around the fact that when the NIH, which is a very respected body, issues a moratorium, it does tend to create a cloud over the research—a question of “Is this an area of concern?” And because the NIH chooses not to fund that research, it raises questions as to whether private funders will follow their lead.
A moratorium also creates a subtle dynamic that hurts the growing up of the field, because then younger people might say, “Oh, I don’t know if I want to go into that. It just seems like political football, and they’re not funding it; I won’t be able to secure funds and do research in that field.”
Q: What is the role of NIH in determining US science policy? What other players are involved on the federal and state level?
Many federal agencies (such as the National Science Foundation [NSF], Health and Human Services [HHS], the Centers for Disease Control [CDC], and the Food and Drug Administration [FDA]) have some influence on science policy. Other agencies such as state and local departments of health play a role as well.
But, at times, with cutting-edge bioethical issues, there’s a vacuum of regulation. For example, with stem cell research, even though President Bush had issued his Executive Order that public funding of stem cell research should be very limited and the NIH developed funding guidelines consistent with his Executive Order, there existed no federal law regulating stem cell research, only guidelines restricting the federal funding of such research.
And so it was interesting, because during that time period, stem cell research was subject to a patchwork of state laws, some of which prohibited it altogether, some of which allowed it but only under certain restrictions. This eventually created problems for researchers and research institutions overseeing this work, because researchers collaborate across institutions, and such collaborations were also subject to this patchwork of regulation.
The National Academy of Sciences (NAS) eventually stepped into this gap and convened a committee of scientists and ethicists and lawyers to develop a consistent set of guidelines for the conduct of stem cell research. Many states eventually incorporated those guidelines into their state laws.
The NAS committee stopped meeting in 2010, so the most current guidelines are those developed by the International Society for Stem Cell Research (ISSCR). These are useful because a lot of scientific collaborations are international in nature, and if other countries are following those guidelines, then scientists can work together across national boundaries.
I used to be a regulator myself, and we spent a great deal of time in Massachusetts seeking input from different stakeholders and trying to understand the contours of the science and how it is conducted. But even when you’re writing regulations and conducting public outreach, there are details or important factors you may miss. So there is also a place in the regulatory process for the scientists, in conjunction with lawyers and ethicists, to develop so-called professional guidelines in emerging areas of science that raise these types of bioethical issues.
It is also important, whenever developing these policies, to understand not only the scientific and bioethical issues, but also the lay perspective by engaging members of the public to get a sense of what their concerns and fears are. Those concerns and fears may or may not lead to restrictions on the science, or they may inform scientists or policy makers of how better to clarify or communicate the science to a broader audience.
Q: What do you think would be most helpful to educate the public in a way that is both accurate and engaging?
A: It might just take having more types of public forums on scientific issues, where scientists and bioethicists can engage with the public. It’s important that the public understands what’s going on, that what happens in academia isn’t this “black box”—because secrecy breeds mistrust of the science, and that can create problems. We saw this with the article that linked vaccines to autism. The research underlying the article was not responsibly done, so when other people tried to replicate the research, they figured out that there is no link between vaccines and autism. But by the time those other studies were published, it was too late to change the minds of the public.
Q: If you could change anything about the ways Americans engage with these challenging issues, what would that be?
A: I wish that there could be more discussion rather than just sound bites and flashy headlines. When science is communicated in the public sphere, it is frequently done so in black and white terms: “This is bad; this is good.” In a public forum, people are less comfortable with seeing shades of grey in something that has been presented as a black and white issue.
Sometimes the marketing of scientific advances can contribute to this problem: scientists and the media get excited to announce a discovery and give it some sort of pithy name without realizing that the name itself might be misleading or inspire fear or discomfort among the lay public. Imagine, for instance, a scientist announcing: “Oh, we have brains on a chip! This is really exciting science!” This might conjure up images of robots with human-like characteristics coming to life, or any number of sci-fi–like images. But if you were to actually explain to people the science behind the pithy name, they wouldn’t necessarily recoil as they might from the image the name itself conjures up—it’s just the way you’re marketing or packaging the story.
It’s also how we as the public consume stories, and how our political process manipulates these science sound bites. I suppose that’s why a lot of the science stories come out as very sensationalist or as playing into our wish lists for quick fixes, like “Oh, this study shows that eating chocolate can reduce your risk of heart disease!” It’s an issue on both sides: we want to consume this information, so the press and scientists are packaging such discoveries in a way that can contribute to the problem. Additionally, this oversimplification of the science allows for easy manipulation for political gain as we have sometimes observed.
Q: What would you like our readers to take away from our discussion today?
A: Going back to the education point, I think it’s dangerous for the public to blindly accept the simple characterizations of scientific advancements or the political manipulation of these stories. If you look back and take any point in history, there was some advancement in science that made people exclaim “That’s crazy!” For example, the idea that the earth is round—“Why aren’t we falling off the earth?” There have always been stages where people have been suspect of scientific discoveries, but one shouldn’t let fear hold back the progress of science.
I also think it’s important that individuals not jump to conclusions and instead try to understand the issues more, because jumping to conclusions can lead to public health issues. In the example of autism and vaccines, now we are dealing with a lot of diseases we thought we had eradicated, like whooping cough and mumps, because some people aren’t vaccinating their children. The root of the problem is a reliance on inaccurate science, but even though the scientific process and the scientific community have corrected the error, it is difficult to un-do the damage in the public sphere.
So if there is something that grabs your attention, dig a little more, read a little more, or go to a forum and ask questions. Don’t just accept these characterizations or manipulations of scientific advancement at face value, because I think it’s dangerous for the progress of science, but it’s also dangerous for the public.
Caitlin A. Nichols is a Ph.D. candidate in the Biological and Biomedical Sciences program at Harvard University.
The text of this interview has been edited for clarity and concision.
This article is part of our Special Edition: Dear Madam/Mister President.
For more information:
“Beyond mythology: NIH plans to lift ban on chimera research” (SITN Blog, Harvard University)
“Stem cells: a brief history and outlook” (SITN Blog, Harvard University)
“Never an easy answer: The ethics of stem cells” (SITN Blog, Harvard University)
“Stemming the science drain: Outlook on U.S. stem cell research under the Obama administration” (SITN Blog, Harvard University)