An illustration depicting the public performance of scientific expertise. Four white figures in a science laboratory handle puppeteering strings that hold up a white lab coat. A crowd watches the lab coat as if they are watching a marionette performance. Artwork by Sophie Wang .
How does the legacy of the 1975 Asilomar conference inform recent and ongoing regulation of CRISPR-Cas9 gene editing technologies? How do these regulation structures reproduce social inequities?
Find out in this new installment of Backstage Decisions, Front-stage Experts!
Missed the last section? Click here!
Want to start from the beginning? Click here!
Replication of the Asilomar Model
Since 1975, the Asilomar Conference has continued to serve as a model for decision-making around new technologies. The repertoire goes something like this: academic experts hold a meeting, then write guidelines for self-governance. For example, in 2010, 165 academics and members of non-governmental organizations attended The Asilomar International Conference on Climate Intervention to discuss geoengineering. [1] Following this conference, five general recommendations were developed with the intent of guiding climate engineering research to be safe, responsible, and effective. [1] The same act was put on by proponents of Artificial Intelligence (AI) in 2017. Assembling at the Asilomar conference grounds in January, the attendees of the Beneficial AI 2017 meetings were leaders and researchers from academia and industry that developed guidelines for the future of AI research, ranging from data rights to the potential for super intelligence. [2] These guidelines were named The 23 Asilomar AI Principles. [3]
As new gene manipulation tools were uncovered through the 2000s and into the early 2010s, the need arose again to have a serious conversation about new risks, hazards, safety regulations, and beneficial applications of these new technologies. These new stages would echo the social and political limitations of Asilomar and, almost as if carefully rehearsed, scientists continued to write-in authoritative roles for themselves. This is, to a large extent, what has happened with CRISPR-based genome editing.
The CRISPR-Cas system is a biotechnology now being used widely across the life sciences to manipulate or “edit” DNA. Its emergence in 2012 has led scientists to mobilize a new set design for the genetic engineering stage. Because CRISPR-Cas was brought into a different historical and political moment than rDNA, it raised new concerns about the application of genetic engineering technologies. Echoing Asilomar, molecular biologists, biomedical researchers, and ethicists have organized expert meetings, public panels, and closed door committees to address the technical, social, and ethical limitations and outcomes of the technology. Each of these venues is a stage where participants juxtapose the benefits of applying this technology to treat hereditary diseases, like hemophilia and sickle-cell anemia, against the risks of its application in germline editing and human enhancement.
A small backstage meeting in Wine Country
An early catalyst of these decision-making efforts was a closed-door meeting held on January 24th, 2015, in Napa, California. To understand how this meeting helped set the stage for broader discussions around CRISPR, we interviewed some of the meeting’s participants and did some digging. The Napa Valley meeting included a small group of 19 attendees, all of them affiliated with prestigious research universities. We emailed each participant about our interest in better understanding the process of expert decision-making and public engagement around genetic technologies. We also discussed our interest in developing educational resources and to broadly disseminate themes from our interviews to enhance public engagement with genome editing. All but three of the attendees were scientists and two of the attendees had expertise in law and bioethics. This small group also included three senior researchers who had participated in the 1975 Asilomar conference, including David Baltimore and Paul Berg. We learned this was quite deliberate, as the genome-editing scientists who convened the meeting wanted to learn from and model their decision-making after Asilomar.
We asked participants of the meeting what kind of expertise they brought to the table and why they thought they were invited to participate. To our surprise most of the scientists described their personal connections to Jennifer Doudna, one of the lead inventors of CRISPR-Cas9 and one of the organizers of the meeting, rather than any specific proficiency in genome editing science. One participant discussed at length how they were connected to each of the invitees: going to graduate school together, participating in the same field of research, or being office neighbors. In the view of another participant, this selectiveness was partly why the meeting was successful and productive.
Like the committee organizing the Asilomar conference, the cast of the Napa meeting was made up of a group of tightly connected experts who were committed to the development and public acceptance of genome editing. They assembled at the Carneros Resort and Spa, amidst a backdrop of rolling hills covered by rows of grapevines. The agenda of the meeting included a one-hour group discussion titled Lessons from Asilomar, as well as other three other sessions: Legal Aspects of Genome Engineering, Future of Stem Cell Research, and Emerging Scenarios: Scientific, Political, Bioethical. From our interviews, we learned which topics the participants prioritized and which weren’t seen as pressing. During the meeting, participants brainstormed strategies for exploring and discussing emerging issues with the aim of advancing genome editing research in a responsible way.
Issues around germline genome editing took up the bulk of the discussion. Members expressed genuine concern that germline genome editing (modifying eggs, sperm and embryos in a way that genetic changes will be passed down through future generations) would prove too sensitive and volatile of an area of application and worried that the specter of eugenics and “designer babies” would threaten the availability of funding for biomedical applications of genome editing. Instead, attendees agreed that non-germline, or somatic genome editing was less controversial of an application. Somatic editing includes the editing of cells that make up muscle, skin, connective, and nervous tissues. Our interviewees suggested that little critical attention was given towards somatic genome editing.
Hank Greeley, a Professor of Law at Stanford University and an attendee at the Napa Valley meeting, discussed in a blog post the lack of attention given to somatic gene editing: “changing the genes of one person, who will die without passing those on to anyone else, just hasn’t raised deep questions.” This statement reflects scientists’ general perceptions about what risks are relevant. In this case, they estimated and assumed that somatic editing for clinical purposes would be uncontroversial.
Somatic gene editing has its own unique set of political, economic, and cultural challenges. Lack of nuanced questioning of the potential consequences of somatic gene editing prevents much-needed conversations about product regulation, industry and market oversight, and genetic technology misuse that can reproduce social inequalities and disregard for patient’s rights. One participant drew from their clinical background to elaborate on the implications for patients and their families, which they argued was not being taken into account by the small group of bioengineers and molecular biologists. They discussed how their medical experience made them more aware of implementation hurdles than some of the other attendees that were asking questions using a more theoretical lens.
One of the participants felt that the preoccupation with germline genome editing also eclipsed important concerns about the use of the genome editing in non-human animals and plants, which they felt could have more significant environmental consequences. By the end of the day, participants agreed that more discussion was needed and drafted a report about these issues.
A month and a half later, the group published the report as a policy forum in Science, entitled “A Prudent Path Forward for Genomic Engineering and Germline Gene Modification.” The paper discouraged work on germline genome modification in humans until more research could be done. [4] Additionally, it promoted the creation of educational forums to engage the public about the societal impacts of the CRISPR-Cas system, and stressed the need for transparent research that evaluates the efficacy and specificity of CRISPR. [4] While some of the people we interviewed acknowledged that a wide array of society’s constituents needed to be included in discussions about the ethics of genome editing, the Napa meeting reproduced the outcomes of the 1974 Berg Letter and the Asilomar meeting: a small group of researchers set the basic framework for further deliberation and the creation of forums predominantly led by well-established academic scientists.
The sidelining of social concerns and the ethics of somatic editing
Many subsequent decision-making forums around genome editing have focused more on the technical concerns associated with the application, feasibility, and efficacy of the CRISPR-Cas system to edit the human genome, rather than trying to address how bringing this technology into existence will affect interpersonal relationships and the social fabric of society. That is not to say that technical worries are unimportant; it is crucial that scientists make sure the technology is not making changes to the genome where it shouldn’t. However, technical discussions are insufficient substitutes for meaningful conversation about the totality of risks associated with using CRISPR-Cas9. [5] Issues that scientists characterize as “technical” also have important social and ethical dimensions. As a 2019 tweet from @CRISPRjournal illustrates, framing an issue as solely “technical” suggests risks can be reduced through repeated experiments and troubleshooting. 
One area where technical issues meet moral and religious concerns is human germline genome editing. In effect, the “designer babies” framing that was central to the Napa Valley meeting has become the touchstone when debating the effects of the CRISPR-Cas9 system and has garnered the most public attention. Moreover, the distinction between germline and somatic editing has become an overarching tenet of these discussions. The overwhelming focus of germline genome editing has disarmed worries about a host of other issues, making them either secondary or unproblematic.
While issues of equity, accessibility, and patient rights have arisen in various forums, these conversations typically end with researchers deferring to needing broader audience participation or different forms of expertise to address these issues. But a broader stage has yet to be set.
The dominance of historically privileged identities in these decision-making meetings creates inherent biases regarding which equity and social justice concerns are considered in broader discussions. CRISPR-based treatments are in development for diseases such as sickle cell disease and X-linked severe combined immunodeficiency (SCID-X1), which both have higher incidences within very specific demographic populations (i.e. Black people and individuals assigned male at birth, respectively). Some of the areas where scientists are hoping to use CRISPR are disabilities, such as deafness and blindness, which raises concerns about scientific ableism and blurs the line between therapeutic genome editing and enhancement. The publics consulted about these issues are often representatives from one or two patient advocacy groups, which is not representative of the social stratification of people with those conditions or disabilities. As we explore in the next post, if the social values and interests embedded in genetic technologies are not confronted, we risk reproducing existing social hierarchies. Next, we further examine how the committees charged with addressing difficult questions are formed, such as what is and is not acceptable to “edit” away and who will have access to this technology.
Click here for the next part!
Click here for the entire series!
[1] Asilomar Scientific Organizing Committee (ASOC), 2010: The Asilomar Conference Recommendations on Principles for Research into Climate Engineering Techniques, Climate Institute, Washington DC, 20006 http://www.climateresponsefund.org/images/Conference/finalfinalreport.pdf
[2] Dutton, T. (2018) “The Beneficial AI Movement,” Medium, Jan 25, 2018 (Accessed online: https://medium.com/politics-ai/the-global-politics-of-ai-1-the-beneficial-ai-movement-b17ac411c45b)
[3] N.a. (2017) The Asilomar AI Principles, published by The Future of Life Institute (Accessed online: https://futureoflife.org/ai-principles/)
[4] Baltimore, D., Berg, P., Botchan, M., Carroll, D., Charo, R. A., Church, G., … Yamamoto, K. R. (2015). Biotechnology. A prudent path forward for genomic engineering and germline gene modification. Science (New York, N.Y.), 348(6230), 36–38. doi:10.1126/science.aab1028
[5] Bosley, K. S., Botchan, M., Bredenoord, A. L., Carroll, D., Charo, R. A., Charpentier, E., … & Greely, H. T. (2015). CRISPR germline engineering—the community speaks. Nature biotechnology, 33(5), 478.
