Main article
We would like to begin by thanking all of the experts who took the time to meet us and enlighten us with their perspectives on the difficult thematic of bioethics and synthetic biology with regard to communication and responsibility. Although they are not all quoted in the following article, talking with each and every one of them was crucial in helping us explore the practical and ethical issues we were confronted with. In alphabetical order:
Gaia Barazzetti
Lazare Benaroyo
Aurélie Coulon
Denis Duboule
Delphine Ducoulombier
Xavier Gravend
François Lefort
Jean-Christophe Méroz
Oliver Peter
Didier Trono
Christian Vez
Ethicist, researcher at University of Lausanne, specialist in bioethics
Ethicist, researcher in ethics linked with genomics at University of Lausanne
Journalist at Le Temps, section science
Scientist, researcher at EPFL, specialist in embryology
Scientific mediator at l'Eprouvette, the public laboratory of University of Lausanne
heologist, catholic chaplain at EPFL
Scientist, researcher in agronomical microbiology at hepia HES-SO, member of the Parliament of the State of Geneva
Legislation division at Swissmedic, Federal agency for therapeutic products
Scientist, head of the high-throughput screening group at Actelion Pharmaceuticals
Scientist, researcher at EPFL, specialist in virology
Pastor, protestant chaplain at EPFL
Interaction and Communication in Scientific Research
By Cyril Pulver and the 2015 EPFL iGEM team
The stakes are high when it comes to science communication - an intricate process in which scientists expose their work and the media relay this technical information for the general public to perceive. This is especially true in Switzerland, where direct democracy and referendums allow the population to vote on very specific questions, scientific topics included. Research in synthetic biology could have come to an end had the 1998 federal popular initiative “for the protection of life and the environment against gene manipulations (initiative for genetic protection)” been accepted. Indeed, production, acquisition and handing-over of any genetically modified animal would have been prohibited [1].
Given the importance and relevance of this topic, we decided to investigate the issue of communication and interaction in the field of science. We began our investigation by attempting to identify the general public opinion before discussing this outlook with a panel of experts from different fields such as biology, ethics, politics, law, industry, religion and journalism. It quickly became obvious that the matters of communication and interaction raise extremely difficult questions, and we do not claim we have a final answer. Instead, we tried to highlight the different opinions we encountered during these interviews and help sketch the landscape of science communication in our country.
The GMO stigma
In order to assess how the general public perceives the field of synthetic biology, we designed a survey that we submitted to people passing by a stand we held in the streets of Lausanne. The survey and its results can be found on the Human Pratcices page of our website. The first salient result of our survey was that people reacted very differently to the subject of synthetic biology depending on whether the acronym GMO (Genetically Modified Organism) was present or not in the question they were asked. While our survey stimulated the interest and the curiosity of the subjects as they were reading and answering the questions (many even asked about the veracity of past iGEM projects), this open-mindedness faded out when the word GMO came up. These two seemingly contradictory positions underline a big problem in the way people in general understand synthetic biology, in Switzerland at least. We mentioned it to Prof. Denis Duboule, geneticist and professor at EPFL: “These reactions are very interesting”, he says, “It pinpoints the fact that that the word GMO has become a stigma. This situation accurately reflects the repercussions of poor scientific communication. After all, people only read what is given to them”. “GMO is one of those buzzwords we hear too often without actually knowing what is meant, apart from their association with controversies and scandals” notes Aurélie Coulon, journalist for the Swiss daily newspaper Le Temps. Indeed, several people spontaneously mentioned the scandals associated with the agricultural biotechnology corporation Monsanto. One of them even accused the United States of being “the greatest terrorists on the planet” concerning their use of GMOs. For Prof. Duboule, the problem stems from the often confusing debate in which GMOs are all tarred with the same brush “We have to distinguish political, ethical and scientific problems. […] If you ask me about GMOs from a scientific point of view, I can assure you: they are not dangerous. […] However, I am totally opposed to the policy of corporations that sell sterile seeds”, he adds as an illustration.
Dreams and red flags
Our goal was also to gauge the public’s reaction to the use of genetically modified organisms in various fields. We therefore asked passersby to give their point of view on a few examples of GMOs designed to be used in medicine, environment or agriculture (see our survey). We purposefully introduced polemical uses of GMOs, such as the modification of human embryonic cells in order to cure genetic diseases. Surprisingly, the sole statement that collected a majority of negative reactions was related to agriculture, i.e the engineering of a wheat strain capable of adapting to climatic conditions. Agriculture seems to be the scapegoat of all synthetic biology’s excesses. Prof. Duboule suggests the following analysis: “Via association mechanisms, wheat and GMOs bring people back to sensitive issues such as nutrition, the challenge of third world development, overpopulation. […] Unlike the idea of conquering Mars, life sciences are not so evocative of dreams”.
Managing transparency
Unquestionably, it will be difficult if not impossible to free the word OGM from all the prejudices that now define it. This is an example of how the the scientific world was unable to successfully communicate with and inform the general public. In the light of this failure, how should the scientific community efficiently communicate with the outside world? What should be done to prevent an expression like “GMO” from drifting away from its original meaning? Transparency may be an answer. “We should make the system so transparent that people don’t even need to look into details. Trust is important!” claims Oliver Peter, head of the high-throughput screening group at Actelion Pharmaceuticals.
However, transparency also has downsides as it may nurture a form of scaremongering: communication must be managed with care. We can take the very heated and publicized debate around the CRISPR-Cas9 protein as an example. This protein makes the editing of the genome quicker and cheaper than ever, thus opening new perspectives for genetic manipulations applied to animals, and ultimately humans. This technical breakthrough has had the side effect of shining the spotlight on the very fundamental issue of what is acceptable or not when it comes to manipulating our genes at will as well as the risks involved in trying to do it. When using the CRISPR technology, one of the important technical difficulties is the presence “off-target effects” that can lead the protein to cut in an unwanted spot in the genome. The imprecision of the technology could have dramatic consequences if used in a medical environment. However, we can hypothesize that an overly alarmist media coverage of these “off target effects” could lead the general opinion to be definitely opposed to any further research concerning CRISPR-Cas9, especially future therapeutic applications. From this assumption, a solution would be to not even be discussing those “off target effects” until they are resolved by the researchers. “Managing transparency is a work the scientist could do and would be a lot more productive than not saying things, or exposing extreme points of view in order to tame the public’s concerns” claims Prof. Gaia Barazzetti, ethicist specialized in bioethics. “I believe that publicly speaking about risks - if scientists ever agree on a way to do it - could be a good opportunity to build trust with the general public”, she continues, stressing that a constant race for spectacular innovation is not the only way forward in science. Time should be taken to talk about risks and how to reduce them, she adds. Conversely, according to Prof. Duboule, public exposure of the current technical issues encountered by a technology such as Cas9 tends to move the debate away from the really important questions. “For me, those [off target effects] are secondary problems that will be solved in the coming decades. The real question is: how will we apply this technology?”
The desire for a constant and transparent flow of information is certainly praiseworthy, but how exactly could it be achieved? Traditional media such as newspapers, radio and television can participate in this process, but they tend to focus on science only in the case of significant scientific breakthroughs or important scientific fraud and polemics, as they need to stay entertaining and relevant for their respective audience. “There is unfortunately no room in mainstream media to talk about science and the actual process of research: how research works, where the money comes from, how papers are reviewed and published”, regrets Aurélie Coulon, “Such subjects only show little interest to the Editor-In-Chief, except in the case of a great fraud. Therefore, the reader never gets the keys to understand shocking news. […] As a journalist, I try to describe the methodology and to explain the words again, those that look simple in particular. But all this is definitely not easy in a one-way communication context”.
Breaking the one-way interaction model
The remark about the existence of a “one-way communication context” leads to the issue of the interaction between scientists and the general public. Does such an interaction really exist? We asked the public about during our survey in Lausanne, and the answer was mostly negative. “Science should be discussed more often in the street, with the public” or “Scientists should make an effort” were recurring comments. Despite this perception of lack of communication, the media coverage of science in Western Switzerland seems adequate according to Prof. Didier Trono, researcher at EPFL and former Dean of the Faculty of Life Sciences: “I believe that a lot of effort is made in order inform the general public”, he told us, furthermore underlining the large offer of media content available in the region, including daily national radio shows and weekly TV shows. Not only national media, but also private media such as newspapers regularly talk about science and related social concerns, he adds. “It can be better”, Prof. Trono conceded, “You should never miss an opportunity to go and inform the people. We could be more imaginative in the programs we design for schools and for the public in general”.
Despite the variety and abundance of information available for the general public, the overall feeling that interaction is insufficient remains .This may be due to the fact that information alone is not sufficient to create interaction, as it only goes one way. A less top-down way of informing the public could be found in more participative methods. The University of Lausanne for instance provides to the public an open-access lab called “L’Éprouvette” (French for “The Test Tube”) [2]. In parallel, they offer introductions to scientific research with both practical experiments and discussions about the issues around Science. Other examples are the DIY biohacker spaces that are burgeoning outside institutions, such as the “Hackuarium”, a Lausanne-based bio-hacker community with which last year’s EPFL iGEM team collaborated [3].
If communication and more importantly interaction between scientists and the general public appears to be essential, another big question comes to the mind: which stance should the scientist adopt in the discussion process? Do his competences give him authority to stand above the general public? Prof. Trono insists: “We [scientists] have to constantly be discussing with the public. However we must not present ourselves as those who know everything, compared to the uneducated crowd that awaits for a magic kit that works by simply pushing a few buttons”. Such position requires the scientist to step back from his everyday research and from his own interests in order to get an overall view of the situation, which, as Prof François Lefort, biologist and member of the Parliament of the State of Geneva underlines, is not easy: “One must bear in mind that a scientist does not only work to discover things, even if that is exciting [...]”, he told us, “But he then has to take the necessary time to understand and reflect upon his discovery, to realize whether it is dangerous or not. It is not only philosophical, but very human. [...] It is a matter of survival”.
We also asked Prof. Lazare Benaroyo, ethicist and researcher at the University of Lausanne, about the position of the scientist in the information process. “I believe that interacting with the public and participating in the information process is part of the scientist’s responsibility”, he says, “It is a central matter. We hear people say: yes of course, we have to inform people because we have to respect their will, and for them to express it, they have to be informed. The problem is that when we are informing, we are already giving our own vision of things. So is it really an information?”. This analysis brings up another issue: scientists do not learn how to discuss their field of research with the general public and other experts such as humanities specialists. “It has to be taught to researchers during their training”, Prof. Benaroyo affirms, “A researcher has to be able to step back and question his own work”.
Responsibility
Recently, CRISPR-Cas9 has generated a heated debate on the way it could be used in gene therapy, which has led us to investigate the issue of the responsibility of the outcomes of scientific research. We asked the public in Lausanne about it, and the main answer was neither “the people” nor “politicians”, but by a great margin: “scientists”. Oliver Peter totally agrees with this answer: “That’s very clear and very easy: it’s you [scientists, who are responsible]! You and your conscience. You can never delegate an ethical decision to a committee, to your boss or anyone else for that matter. In the end, if you do not feel good about it, you must not do it, even if people disagree with you”. This, of course, is one way to see the problem. But it creates a paradox: on one side, people ask for more interaction with scientists and on the other side, they fully delegate the responsibility of research to the scientific experts. “It is a very complicated question, and you are talking about the crux of the matter. We do not really know who has to debate. Of course, society, because those are ethics problems that affect it as a whole”, Prof. Duboule says.
How can society as a whole be represented for such a debate? “Scientists have to shed some lights using their knowledge in order to clarify what was not properly understood”, Prof. Trono suggests. “We need ethicists who think deeply on social repercussions of research. However, the general public also has the role to be well informed, and not indoctrinated. It is a societal dialogue, and this role is claimed by ethics committees – I’m thinking about the National Academy of Sciences in the USA for instance – that aim to represent society as a whole”. Prof. Trono was not the only one to mention ethics committees. “There are national ethics committees consisting of scientists, politicians, and sometimes philosophers in each country. Judgment has to come from there, if those committees are reliable of course. But you, as a scientist, have to wonder about your own project. The first defence line is people [scientists] like you”, Prof. Lefort insists.
Another way the media address the matter of responsibility in Science is by invoking “playing God”, a very strong symbol (which goes back to the polemical way some media cover scientific topics), and can be understood as “not respecting what God gave us by modifying the genome”. Xavier Gavend, theologist and chaplain at EPFL gave us another view on this subject by invoking the great importance of humility (which Prof. Benaroyo also mentioned as being a necessary quality for a scientist): “From a Christian perspective, it is with humility that greatness can be achieved. That is the whole paradox: we are responsible, we are in charge, but we are not Gods ourselves. We do not want to make ourselves Gods”. According to Xavier Gavend, the responsibility stemming from research might be too much for a human being to bear.
Moratoriums, necessary safeguards or obstacles?
Another way to discuss a breakthrough technology, how it should or should not be used, consists in declaring a moratorium, meaning that all research involving the specific technology is interrupted until a general agreement is found between researchers and all other stakeholders. A well-known example of such approach occurred in 1975 when a moratorium concerning genetic manipulation took place in Asilomar. Earlier this year a group of scientists who participated in the discovery of CRISPR-Cas9 called for a worldwide voluntary moratorium in order to discuss the ethical consequences of being able to easily edit and modify the human genome in an inheritable way [4].
Of all the topics covered with the experts, moratorium is the one that caused the most contrasted reactions. We encountered three different points of view on the subject. Some specialists insisted on the necessity of moratoriums, as they allow scientists to avoid making disastrous mistakes in the future and keep working in line with ethics: “I think that the word of caution made by these scientists matches with a broad consensus in the scientific community: we do not wish to modify the human germline in any way”, Prof. Trono affirms, also reminding us that the question of human genome manipulation is not a new one. Jean-Christophe Méroz, member of the legislation division at Swissmedic, emphasized that a moratorium on clinical applications of a technology is not to be confused with a moratorium on the technology itself. “This is my personal opinion”, he precises, “I’d say yes to a moratorium on any research applied to humans (like the one Prof. Jennifer Doudna called for). But let’s keep on doing our research on cells and animals to verify how precisely we can master this technology. [...] A moratorium should avoid future interruptions of preclinical research”. Méroz also made clear the regulatory assessment of the risks of a potential clinical treatment and ethical debates are two totally different things that should not be mixed up nor lead by the same institutions. Prof. Duboule also expressed concerns about fully stopping the research because of a moratorium, as it would represent a waste of time, above all for sick people waiting for a treatment (patients suffering from cystic fibrosis for example). In addition, moratoriums are, in his opinion, not the right way to address important questions. A third opinion, supported by Oliver Peter, assesses that the debate raised by CRISPR-Cas9 does not bring anything really new to the table compared with the Asilomar moratorium: “I do not think it [a moratorium] is necessary. For me, this technology is making things more feasible, but we have already debated this. And we already decided in our society that we do not want to interfere with the human germ line. There is nothing fundamentally new that one can do with CRISPR-Cas9 as far as I understand it”.
The role of Ethics
A topic that is often mentioned in discussions about moratoriums is the position and the role of ethics in the discussion. Recently, in the shadows of the very mediatized debate around CRISPR-Cas9 and the use of genetic engineering in medicine, ethics and bioethicists in particular have been described as a barrier to progress. An example is the editorial Steven Pinker wrote for the Boston Globe: “The moral imperative for bioethics” published on August 1st 2015 [5]. We also noted a tendency for scientists to expect ethicists to give clear answers to questions like “are we allowed to continue doing such or such experiment?” which is in fact a misconception about the function of ethics in such issues. Prof. Benaroyo makes it clear: “Ethics in itself will usually not give an answer as a matter of principle, ethics is reflexive, meaning that it will ask the questions and explore the issues”. Most importantly, ethics and ethics committees are not to be confused. Ethics committees are not and must not solely consist of ethicists. All stakeholders have to be represented. Typically, for a public health issue, it would mean scientists, members of an association representing patients, ethicists, sociologists, politicians and economists. The role of ethics committees is to make assessments, after having addressed the issues in a protocolar way, but not to lead a public debate between different parties.
A few final words
It seems very difficult to us to give any definite answer to the questions we asked about communication, interaction and responsibility in Science. Therefore, we decided to describe our general feeling after having met the experts and discussed the mentioned topics. It appears essential to us that future scientists are taught how to discuss their work, how to share it with other experts as well as the general public in an interactive way. Also, some form of self-questioning should always be kept in mind by the scientist as he/she is working, as captivating as his/her work can be. This should also include an open mindedness to criticism coming from experts in other fields such as humanities. From our point of view, the scientist should not be the only one able to foresee the consequences of his/her research. Though “ignorance of the law is no excuse”, setting up courses about the current state of legislation in the fields of research that young scientists will be exploring could help them put things into perspective. In a few words, it is all about making Science a little less about technicalities and a little more about social awareness.
References and useful links:
[1] Federal popular initiative “for the protection of life and the environment against genetic manipulations (initiative for genetic protection)” (in french): https://www.admin.ch/ch/f/pore/vi/vis240t.html
[2] Website of the open access lab “L’Éprouvette”: http://wp.unil.ch/mediationscientifique/activites/eprouvette/
[3] Collaboration between the 2014 EPFL iGEM team and the bio-hacker space “Hackuarium”: https://2014.igem.org/Team:EPF_Lausanne/HumanPractice
[4] A prudent path forward for genomic engineering and germline gene modification (2015), Science, http://www.sciencemag.org/content/348/6230/36
