How Is Our Relationship with Science Changing?

An Interview with Ellen Jorgensen

All throughout history, people have questioned scientific discovery (just ask Copernicus). Yet it seems skepticism may be at an all time high.

At the same time, DIY-science is on the rise. From people performing n=1 studies to better understand their own health, to those doing experiments in small labs in Brooklyn, increasingly, people and small groups are taking science into their own hands.

We’ve funded the Citizen Health Innovators Project at the Wilson Center and are supporting a project through the ASU Foundation with Dana Lewis titled “Learning to Not Wait: Opening Pathways for Discovery, Research, and Innovation in Health and Healthcare,” to explore this topic further. Our interest in understanding this emerging trend also led us to Ellen Jorgensen, founder of Biotech Without Borders and a pioneer in the movement of DIY-science.

My colleague, Deborah Bae sat down with Ellen to talk about our changing relationship to science and who gets to produce discovery.

Q: How would you describe our society’s connection to science today and where do you think it’s heading?

Ellen Jorgensen: I think the appreciation of what science can do to enrich our daily lives, has eroded. It’s what really convinced me to enter this world of community labs, do-it-yourself biology and citizen science, because as a scientist, I wanted a much more direct connection to the public. I wanted to break down that barrier where scientists are “them” and the public is “us.”

Photo courtesy of Ellen Jorgensen

Q: What are community labs and what kinds of things are coming out of them?

Ellen Jorgensen: At the very least, community labs are a place where people can come to a neutral space and discuss the questions they have around science and new technologies, whether that’s gene editing and CRISPR, or the evidence around vaccines, in ways that can be really productive and instructive, and where information can actually flow both ways between scientists and the public.

But they also are great spaces for grassroots innovation. They’ve acted as sort of pre-incubator spaces for actual biotech companies. And some of these innovations are coming from not just scientists doing things in their spare time, but actually people that weren’t engaged in science before community labs and now are being taken seriously and creating a bona fide innovation.

Photo courtesy of Ellen Jorgensen

There are also great spaces to support STEM education. There isn’t enough hands-on lab experience in most curricula and particularly not for groups that are in schools that are underserved and may have no lab facilities and no science budgets. Teachers and students are hungry for this stuff and it’s really great to be able to do it in a very cost-effective way through these community labs.

Photos courtesy of the Robert Wood Johnson Foundation

Q: Can you share an example of when a community lab has been used to help deepen a community’s understanding and engagement with science?

Ellen Jorgensen: The community lab is a freer place to have a public conversation around subjects like vaccines or GMOs because people are on neutral ground and it’s a more relaxed, casual atmosphere compared to a lecture at a scientific institution.

For example, we had a scientist who came in and give a talk about vaccines. A participant who didn’t want to vaccinate kept pushing back on her argument, asking how do you know? How do you know? How do you know? She couldn’t articulate it in a way that connected to him. Finally, the woman in the crowd who had invited the scientist to speak, stood up and said:

“Look at it this way, with all the power that the tobacco companies had many years ago where they were desperately trying to control the message and saying that cigarettes were not harmful, they were only able to corrupt less than 50 percent of the scientific publications around tobacco. What’s the chance that the companies that make vaccines which, by the way are not lucrative products like tobacco, are able to control the message so thoroughly that 99.9 percent of the people publishing on vaccines are saying they’re safe?”

And that argument got through because it was logical to him and it didn’t require him to have technical knowledge or to enter that field at all.

These causal spaces allow these kinds of conversation and engagement to happen, and in this case, potentially change someone’s mind around a technology.

Q: What are some lessons you’ve learned?

Ellen Jorgensen: Confidence in science and the conclusions that scientists reach has eroded. You see this particularly around climate change and it happened with GMOs, where the perception was that they’re somehow harmful to humans.

The scientists have to come out of the ivory tower. They can’t operate the way they did in the 1960s anymore where there was huge public trust in what they did. They have to go out and communicate to the general public. Because, after all, most research is supported by public funding, so the public has a right to weigh in on what their money is being spent on.

I think the next generation of scientists are really getting this message at an early stage in their career, that they can’t just ignore public opinion about what they’re doing, because then they risk backlash and at the very least not getting the funding that they need to do their research.

And that’s what so promising about the idea of a community lab; about having a neutral place where people from different socioeconomic backgrounds and all walks of life, including scientists, can come together and have this discourse. It’s a much more dynamic and rich experience of information-gathering around a subject, as opposed to just reading about it.

Photos courtesy of Ellen Jorgensen

They say the greatest fear that we have as individuals is that of the unknown. For too long, an inability or unwillingness of too many scientists to communicate critical information with people outside of academia, coupled with people unwilling to trust those who spend their lives advancing science, may have contributed to an even greater fear — a false certainty of the known.

How might this change in a future where community labs spring up like Starbucks? What if more scientists took off the lab coat and talked with and not at us? And what if more non-academics donned the occasional lab coat to discover truth for ourselves.

In the words of William Gibson, “The future is here, it’s just not evenly distributed”.

Check out the Citizen Health Innovators Map to find the makers, inventors, and other networks of actors driving democratized health innovation across our nation.

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