The public strongly supports fundamental research, but scientists need to do more to share their research with the public, including how it fits within the scientific process, and the potential societal benefits. These are two key findings from public dialogue workshops about genome editing in life sciences research conducted by the Open Responsible Research and Innovation to Further Outstanding Knowledge project (ORION), of which the Max Delbrück Center for Molecular Medicine in the Helmholtz Association (MDC) is a key participant.
The public dialogues were conducted in the United Kingdom, Germany, Sweden and Czech Republic in late 2019 and early 2020. While aimed at understanding public attitudes towards genome editing specifically, some of most powerful findings applied broadly to how the scientific community is viewed, and highlighted opportunities for better engagement with the public.
“It was really fruitful for the scientists to feel how much support and enthusiasm people have,” said Zoe Ingram, MDC’s ORION activities coordinator, during the virtual report launch held March 11. “It’s our job to take these complicated scientific findings and experiments and turn them into something the public can digest, because people are interested.”
Not the usual crowd
The ORION dialogues were conducted in collaboration with global market research firm Ipsos MORI. In each country, 30 people were recruited to participate in roundtable discussions over 1.5 days. The selection process aimed to ensure a representative sample with diverse backgrounds – not a group of self-selecting volunteers who typically attend scientific outreach events.
The coordinators noted that groups of 30 citizens were not meant to speak for entire nations, but the qualitative data could be followed up with larger quantitative surveys. “Despite limited sample size … some of the findings are quite consistent across countries, so we know where there is room for improvement in the scientific community,” said Dr. Emma Martinez-Sanchez, the ORION public dialogue coordinator.
Among the key findings was widespread support for fundamental research, but limited understanding of its role. Research organizations can therefore help explain how fundamental research fits into the overall discovery process, and key differences between exploratory research, translational research and clinical research.
Limited knowledge of genome editing
The events began with assessing participants’ knowledge of basic biology and genome editing. Many participants lacked understanding of basic biology concepts like DNA, RNA and cells. Overall, participants were unaware of or didn’t understand genome editing at the outset.
Case studies about genome editing technology in fundamental research were presented, such as knocking out proteins to understand what they do in the body, as well as more application-focused examples, such as developing more nutritious crops, or trying to turn skin cells into egg cells to save the northern white rhinos.
Participants shared their views on what they thought was acceptable or not; opinions sometimes evolved throughs the course of discussions as participants learned more or considered additional scenarios. Overall, there was much hope for the potential benefits, especially around medical applications, but also many concerns around fairness and regulations.
Completely different perspectives on CRISPR
While participants were especially curious to hear from scientists about their motivations for their research, the exercise was equally as valuable for the researchers.
“When I think about CRISPR, … what I am thinking about is completely different what people in public are thinking about,” said Dr. Fredrik Wermeling, a researcher at the Karolinska Institute in Sweden. “Things that came up in discussions were not things that I could have ever imagined.”
While he enjoys public outreach, he noted that unfortunately it is not incentivized by the academic system, and even disincentivized because it takes time away from writing grant proposals and research papers.
“People change their minds”
Dr. Andreas Ofenbauer was a Ph.D. candidate at MDC working with CRISPR in microscopic C. elegans worms when he participated as a subject matter expert. While it was challenging to remain neutral to allow participants to form their own opinions, he also found it rewarding. “You got to know so many people from outside your filter bubble,” he said.
Others noted how respectful and productive the conversations were, as compared to the much more hostile environment often found online. “[People] want more information and they are very happy to learn more and are able to change their minds,” said Dr. Carine Stapel, a postdoc at the Babraham Institute in the U.K.
Would you inhale?
A related aspect of the ORION project was an art installation called AEON – Trajectories of Longevity and CRISPR, which explored the possibility of stopping the aging process through an CRISPR inhalation device. Artist Emilia Tikka produced the piece while in residence at MDC. The piece sparked intense debate, with many opposed to using the technology this way, especially in the U.K. and Czech Republic. Those in Germany were split on if they would inhale. People in Sweden thought the art piece would work well in public spaces or in schools for educational purposes.
“In Germany, the artwork was very successful in getting people to debate about the technology and discuss genome editing,” said David Hills, a senior research executive with Ipsos MORI.
Text: Laura Petersen