Last night, I attended a public engagement forum at the Boston Museum of Science that was part of their Building with Biology series entitled “Editing our Evolution.” The event was designed as a pilot and part of the audience was composed of people who work at science museums around the country who came to participate and then take the workshop and do it in their own communities. The workshop was focused on addressing societal and ethical questions around gene editing and germline engineering. The opportunity to play the role of the “synthetic biologist” was presented through the Biological Design Center at Boston University. I’ll first talk about the format and logistics of the forum and then write a reflective piece on what I thought of the experience.
The forum opened with a small panel discussion moderated by one of the Museum of Science employees and featured George Church, the renowned geneticist and bioengineer, and Sheila Jasanoff, the director of the Science and Technology Studies program at the Kennedy School at Harvard University. While George offered expertise in the technical and scientific details of gene editing, Sheila offered a perspective on the intersection of science and culture. Their discussion was fascinating and echoed many of the ideas and questions I personally have about the implications of gene editing and germline engineering, albeit in much more articulate and knowledgeable words. Their discussion lasted about forty minutes before we moved on to the table discussion portion of the program.
Our table discussions started off with a round of introductions. At my table, we had two people coming from other science museums, a retired M.D. and his daughter, a local couple, one who was a research methods professional and the other a laser engineer, an electrical engineering graduate student, and a computer scientist who was in town for work for the week. We then dove in to discussing three scenarios related to gene editing: one was if we would choose to use a gene edited cure for DMD (Duchene muscular dystrophy) on a hypothetical child, another was the use of an individualized gene therapy for sickle cell and the questions around accessibility, and the last was about using germline engineering modify BRCA mutations (a mutation in the body that raises the risk of breast cancer). For each scenario, we first considered questions if money was not a factor like would we choose to do the therapy, how would we explain our decision to our children, and what would the implications be of not doing the therapy. We then moved on to consider cost and who and how such therapies could and should be paid for. Finally, at the end, each table shared one interesting point or thought that was brought up to round out the discussion.
I want to open by saying I thoroughly enjoyed the experience of participating in the workshop and I think the Museum of Science did a fantastic job in organizing and structuring the event. As someone who has a natural tendency to talk more than they listen (maybe you could tell because I write a blog), I challenged myself to focus on listening first and then speaking later. My first observation that surprised me was the immediate reaction to the panel with Dr. Church and Dr. Jasanoff, where one of the volunteers from another science museum made a comment that they spoke very politically and did not address the question of the ethics of genome engineering. This comment caught me off guard because I felt both of them spoke thoughtfully and with heavy nuance about the subject, inherently acknowledging there are no easy answers to give for any of these questions and so they didn’t. I found it interesting that this came off as being “political” and “not answering the question” to someone from the public, even someone who works at a science museum. This makes me wonder about when people complain that politicians are always avoiding the answers to questions and being political in their answers. As a layperson when it comes to politics, I had always assumed that was true and that it was their job not to give a straight-forward answer as to not offend any of their constituents or donors. Now, I wonder if they really are giving the best answers they could in situations with no easy answers, as Dr. Church and Dr. Jasanoff were, but unless you are as knowledgeable about the subject as they are it comes across as avoiding the question.
My next observation from the discussion was that most of the table was very up for what I would consider controversial treatments. Even when it came to genome engineering to remove the BRCA gene, the table was mostly in favor. It was at this point I had to realize this audience was a self-selection of people who were interested in science and lived in and around Boston, which is a strong bias when compared to the average American. Still, I was surprised how open people were to these technologies. If you had asked me similar questions early in my undergraduate career I would have also probably been all in but my years of training in the field since then have made more skeptical of the field and I find myself wanting for more evidence of safety and assuredness of control before rolling out such technologies. This makes me optimistic that, as my time in the field increases, my skepticism and caution also increases. If this is true not only for me but for synthetic biologists and bioengineers around the country and around the world, then this increases my confidence in their ability to consider stakeholders and implications of their work and not fall into the stereotype of the results above everything mentality we see in popular culture.
The last note I will add is that the time for this discussion absolutely flew by. We always had more to discuss about each case study than we had time for and the ideas people were bringing to the table were interesting and forced me to really think about the best way to respond, given I was the “expert in the room.” I hope to participate in any future iterations of the Building with Biology series at the Museum of Science and to consider how I can continue these conversations both with the people in my program and with the general public. This kind of engagement is essential and I hope that I can continue to develop as an expert and an advocate in the coming years.