This series of three conferences will take place online in May and June 2023 and conclude with a roundtable discussion during the last session.
Contact
Anne Le Goff : alegoff@ucla.edu
Serena Ciranna : serenaciranna@gmail.com
Sonia Desmoulin : sonia.desmoulin-canselier@univ-nantes.fr
Soraya de Chadarevian : chadarevian@history.ucla.edu
Among emerging contemporary technologies, biotechnologies stand to grow most rapidly. Genomic and postgenomic innovations, together with new methods in computation and artificial intelligence, increase the amount of data that can be produced and analyzed. Innovations in cellular culture, genome engineering, or nanotechnologies, allow for the creation of new artifacts and experimental techniques. The global circulation of knowledge, robust public and increasingly private investments support these developments. Biotechnologies raise strong expectations for public health and scientific discovery, as they offer new approaches to research, its applications, and implications, from environmental health to the promises of predictive medicine.
However, the lens of technoscientific progress can afford but a partial view of these new technologies as they entail profound social transformations and choices. As they culture and transform life, these technologies reshape many presuppositions about human and animal life, for instance in the field of reproduction or with the creation of new artifacts such as organoids. They raise questions about the production of biological data and the property of products generated from living materials. Far from being only technical objects, they harbor complex normative and legal questions. They call for the need to develop a collective wisdom not only about the technological futures they open but about the social transformations they entail.
In this series of conferences, we propose to examine three biotechnologies that have seen different degrees of technological and social elaboration: CRISPR-Cas9 genome editing technologies, organoids, and direct-to-consumer genetic testing. Recent scholarly literature has made it clear that these biotechnologies and their cognates require in-depth ethical and legal reflection. However, they remain unequally and insufficiently represented in public debate. Therefore, it will be particularly helpful to consider them both separately and comparatively in order to design a collective reflection on the values they involve and the form of regulation they require. How can existing or emerging biotechnologies become the objects of collective deliberation and, in the end, collective wisdom? Which processes may support a robust dialogue about biotechnologies and enable us to anticipate their potential effects on society? How can we develop institutional frameworks that will foster beneficial and just uses of biotechnologies while, at the same time, address the impact of commercial interests on the ways they are mobilized in society?
1. Developing a collective wisdom for emerging biotechnologies: The case of CRISPR-Cas9 genome editing
Despite being a very recent (2012) addition to the genetic toolkit, CRISPR-Cas9 genome editing technology has transformed experimental practices in molecular biology. Routinely used in laboratories around the world, it has established itself as a base technology for other biotechnologies. It opens novel and remarkable possibilities for engineering vegetal, animal, or human genomes. The scientific community, starting with Jennifer Doudna, the co-discoverer of the CRISPR technology, early on highlighted the ethics and policy questions the technology raises. However, while national and international expert committees issued recommendations, this effort at self-regulation showed its own limitations. It was first undermined by the experiments conducted by scientist He Jiankui, who edited the genome of three embryos that led to the birth of children. Further, experts’ views and efforts have been contested for excluding culturally diverse and lay points of view and values. For the issues at stake are not solely technical. The question of how this technology will impact human and nonhuman life remains to be fully assessed. Here, we will focus on examining possible paths to regulating the applications of CRISPR. We will examine the efforts and initiatives taken to expand and complexify discussions about CRISPR, in particular with the creation of a “CRISPR observatory” in the US and the network ARRIGE in Europe. We will set these contemporary developments within their historical framework and ask how the debate on recombinant DNA in the 1970s with the Asilomar conference may shed light on current regulation efforts with respect to CRISPR. As a constant reference and precedent, the effort at collective wisdom imagined for recombinant DNA will offer a helpful point of comparison.
2. New forms of life: How should organoids be regulated?
Deriving from stem cell research, bio-engineering and bio-impression, organoids stand as a major innovation for experimental research, offering a unique model with human cells. Until now, the development of organoids has followed the norms regulating the field of stem cells as a whole. However, these new artifacts undermine normative classifications since they belong both to engineering and life, to the domain of cells and a self-organization that makes them similar to human and animal organs. Conceived and developed in part to address the regulatory constraints that apply to embryonic stem cells and laboratory animals in research, these biotechnological innovations undermine conceptual and ethical boundaries, as the case of cerebral organoids illustrates particularly clearly. The ability of cerebral organoids to mimic part of the function of a human brain raises questions about their ethical status. How should existing norms be adapted or new norms devised for organoids? A first set of questions involves the commercialization and patenting of organoids. How should they be regulated? Which rights should be recognized to patients consenting their cells to organoid research? A second set of questions concerns the organoids that are produced themselves: how should they be normatively and legally categorized? Should a certain moral status be granted to organoids, or at least to those that represent in vitro the human brain, gonads, or embryo? Which ethical and legal relation should be considered with respect to experimental human-animal chimeras when research leads to implanting “human” organoids into nonhuman animals? Despite the complexity of these novel questions, reflections on the moral and social status of organoids have mostly been restricted to experts. This conference will address the urgent need for a broader debate over these biotechnologies and the values they imply while they are still in their infancy.
3. Direct-to-consumer genetic tests: From individual use to public debate – Wednesday Jun 7, 2023
Direct-to-consumer (DTC) genetic tests are at the same time an easily accessible commercial product and a complex biotechnology. They result from partnerships between biotech companies and the tech industry. The structural convergence between genetic (human genome sequencing) and digital technologies (in particular big data) is manifest in the production and online circulation of personal data or the similarity between the functions of testing platforms and those of digital social networks. While they ostensibly contribute to building a comprehensive database of the human genome and thus to advancing personalized medicine, the voices of users and that of democratic instances are mostly excluded from the governance of the data that is produced. Even though they are framed and marketed as individual products, the risks that arise from these technologies require a collective assessment. We will examine individual and collective issues raised by their uses and interpretations, as ways of producing genetic information and sharing it online. Do these tests create risks of discrimination? Which legal framework should be given to the processing of genetic data? We will pay specific attention to the paradoxical situation in France with regard to the production of genetic data through DTC tests: although DTC genetic testing is illegal, some French individuals buy them online and have their DNA analyzed by foreign companies. Their data then becomes the property of private databases. Because of the existing prohibition, the debate about the results, uses, and interpretations of genetic tests remains scarce. How can we, in the French context, and learning from experiences in other countries, foster a debate on these questions and draw the attention of the public to potential effects of private DNA collection? What are the most pressing questions to address?
This session will conclude with a roundtable on all the biotechnologies that were discussed in the series.