DIETRAM SCHEUFELE, a CALS professor of life sciences communication, serves on a national panel examining the implications of human genome editing.
The committee, appointed late last year by the National Academies of Sciences, Engineering and Medicine, is examining the clinical, ethical, legal and social implications of the emerging technology. Genome editing holds great medical promise but also poses risks of off-target genetic alterations and raises fears it could irrevocably alter the human germline.
Led by UW–Madison law professor Alta Charo and MIT biologist Richard Hynes, the committee will specifically advise on questions about how risks should be quantified and whether some aspects of the technology should or should not go forward.
The ability to “edit” genes to target genetic defects became a much more plausible process with the advent of a technology called CRISPR (an acronym for Clustered Regularly Interspaced Short Palindromic Repeats), which can be used to precisely target and cut portions of a DNA sequence.
Controversy arose last year when a Chinese scientific team used CRISPR genome editing on non-viable human embryos. The experiment produced a number of “off-target events” that altered unintended parts of the genome.
Scheufele has published extensively in the areas of public opinion, political communication and public attitudes toward emerging technologies, including nanotechnology, synthetic biology, stem cell research, nuclear energy, and genetically modified organisms. Web of Science lists Scheufele’s publications among the 1 percent most-cited articles in the fields of general social science and plant and animal science. Scheufele also serves on two other committees for the National Academies of Sciences, Engineering and Medicine: a committee on “The Science of Science Communication: A Research Agenda,” and the Division on Earth and Life Studies (DELS) Advisory Committee.
What’s the focus of your panel?
The committee that I serve on deals with human gene editing research and its potential applications. That includes potential future uses that could alter the human germline, which means that edited genes would be passed on to subsequent generations as part of the human gene pool.
But of course there are a lot of applications of gene editing techniques in agriculture and the life sciences, with the attempts to use genetically modified male mosquitoes to combat the spread of the Zika virus being just one recent example.
What are the potential dangers?
Identifying potential problems or concerns is part of the committee’s charge, and our report will work very carefully through both the scientific complexities of the technology as well as ethical, regulatory or political challenges that might emerge. Many of these challenges are focused on specific applications, such as germline editing. Once germline alterations are introduced into the human population, some have argued, they might be difficult to reverse and to contain within a single community or even country.
In many ways, the benefits are much more clear-cut, especially when it comes to helping parents whose genome puts their biological children at risk of inheriting certain diseases. Many patient advocacy groups are especially excited about the potential for medical breakthroughs in this arena.
What is the charge of your study committee? Are there specific deliverables, and what is the timeline?
The National Academies gave the committee a fairly detailed Statement of Task that can be found on our committee’s web page [link provided below]. In short, we will examine the state of the science of human gene editing as well as the ethical, legal and social implications of its applications in biomedical research and medicine.
Our work actually follows a pretty tight timeline that includes a number of additional meetings and informationgathering sessions. Most of the committee deliberations are open to the public and webcast by the National Academies. Once complete, the draft report will be vetted in a very stringent review procedure. There also have been and will continue to be numerous opportunities for formal public input, including on the draft report. If everything goes according to plan, the report will be released in fall 2016.
What role will you play on it as a communication scientist? What expertise do you bring to the table?
Human gene editing shares a number of characteristics with other recent scientific breakthroughs. One of them is an extremely fast bench-to-bedside transition. In other words, the time it takes to translate basic research into clinical or even market applications is shorter than it has been in the past. New gene editing technologies such as CRISPR provide us with faster, cheaper and more accurate tools for gene editing. But that also means that we as a society must have many of the ethical, legal and social debates surrounding gene editing at the same time that we are developing potential applications.
That is why more and more scientists are calling for what Alan Leshner, former CEO of the American Association for the Advancement of Science, has described as an “honest, bidirectional dialogue” between the scientific community and the public. Interestingly, the 21st Century Nanotechnology Research and Development Act of 2003 legislatively mandated public engagement through “regular and ongoing public discussions.” So the idea is not new, and researchers in the Department of Life Science Communication (LSC) at CALS were in fact involved in two long-term NSF center grants examining the societal impacts of nanotechnology and ways of building a better public dialogue. As a result, much of the research teaching we are doing here in the department focuses on how to best facilitate communication about emerging science among all relevant stakeholders in society.
What experiences from past science communication efforts inform your thinking about how best to communicate about gene editing?
Much of our work in LSC over the last few years has examined emerging areas of science that are surrounded by public opinion dynamics similar to what we might see for gene editing. This research has included work on public opinion on embryonic stem cell research, and also research on how non-expert audiences make sense of the risks and benefits of genetically modified organisms. Our research program has also led to regular engagements with policy communities in Wisconsin and in Washington, DC. When I co-chaired the National Academies’ Roundtable on Public Interfaces of the Life Sciences, for instance, I worked with bench scientists, social scientists and practitioners to build a better dialogue about emerging technologies between scientists and the public. g What aspects of gene editing seem to confuse or frighten people the most? We just collected two representative national surveys, tapping people’s views on synthetic biology, gene editing and other scientific breakthroughs. And our findings show that concerns about overstepping moral boundaries with potential applications of gene editing in humans and “blurring lines between God and man,” as the question was phrased, are definitely on people’s minds when thinking about this new technology. In LSC, we will continue to track public attitudes, especially surrounding the societal, ethical and regulatory questions that arise from applications of gene editing.
Obviously people are already reporting, writing, thinking and talking about CRISPR. Do you have any immediate recommendations for how to communicate about this subject?
It will be particularly important to keep two things in mind. First, this is an exciting area for science, but many of the questions and debates surrounding human gene editing will focus on ethical, moral or political rather than scientific questions. And we as scientists should be prepared to engage in those discussions, making sure that they are based on the best available science.
Second, having an honest dialogue among different stakeholders will require a conversation that is—at least in part—about values. And scientists will have to resist the intuitive urge to try and convince others by offering more scientific facts. Our own research and that of many colleagues has shown that the same scientific information will be interpreted very differently by audiences with different value systems. The same science, in other words, means different things to different people. And public reactions to many potential applications of gene editing will be no exception. g
PHOTO – Dietram Scheufele, professor of life sciences communication.
Photo by Sevie Kenyon