Beyond Therapy and Enhancement: Restructuring Ethical Debates on Biotechnological Innovation
The rapid growth of biotechnologies since the mid-1970s has provoked sharp questions about the risks and values that guide the development of life science research and its commercial applications. This one-day symposium invites an interdisciplinary group of participants to reconsider the ways in which ethical debates about biotechnology proceed. Champions of biotechnological innovation—from recombinant DNA development and stem cell and tissue engineering, to IVF, gene editing, and gene drives—have promised a bright future of healthier human beings and more productive plants and livestock. These technologies have also generated concern about the risks they might pose to the environment and human health, and the changes they portend for the categories of “life” and “humanity.” Yet, all too often, rushed bioethical debates reduce biotechnologies to the twin possibilities of therapy or human enhancement, a framing that precludes a broader conversation about the roles of biological knowledge and biotechnology in our social and political lives.
Since 1975, biologists have by and large successfully claimed that their own standards of self-regulation are sufficient to check the dangers and risks of novel biotechnologies. However, as these technologies move from scientific curiosities to powerful off-the-shelf tools, careful consideration of the processes of decision-making regarding appropriate use and regulation becomes ever more pressing. Many biologists have begun to recognize the limits of self-regulation, at the same time as humanists from a wide range of disciplines have begun to incorporate new biological ideas and biologically-grounded concerns into their theoretical and creative work.
We are convening this symposium in order to think about what it means to broaden our bioethical literacy at the same time as both humanist scholars and the public at large have increased biological literacy. This symposium asks participants to identify and articulate the types of argumentation that are or should be at play in debates about the ethical implications of biotechnological innovation. Such modes of argumentation might, for example, expand the spatial, demographic, and temporal purview of ethical evaluation. They might touch upon questions concerning the role of scientific expertise in ethical thinking, the freedoms and constraints posed by engineering, and the place of moral and ontological beliefs in discussions about the relations among humans and between humans and their environs. Alternatively, they might question the timing of bioethical questions: do they arise at the prospect of the application of biotechnologies? or are they in play in the material practices and processes of biological research itself?
9:00 am: Introduction by Sam Frost, Rosine Kelz, and Dan Liu
9:30 am: Jane Calvert, “Otherwising: Normative Engagements with Synthetic Biology”
10:30 am: coffee break and snacks
10:45 am: Luis Campos, “The Ghost of Asilomar”
11:45 am: Julia Diekämper, “Let's Talk About…Genome Editing”
12:45 pm: Break for lunch. (Lunch will not be provided)
2:00 pm: Jeantine Lunshof, “The Point of Convergence: Humanities and Science at the Bench”
3:00 pm: Kris Saha, “Editing Diseases in a Dish”
4:00 pm: coffee break and snacks
4:15 pm: Shobita Parthasarathy, “Ensuring CRISPR Serves Society by Thinking Creatively About Policy”
5:15 pm: wrap-up discussion
Jane Calvert (University of Edinburgh) — “Otherwising: Normative Engagements with Synthetic Biology”
I am a social scientist and not a bioethicist, but I have increasingly found myself wanting to make normative interventions into my field of study—synthetic biology. This is not a direction I had expected to take. I was initially drawn to synthetic biology because I was interested in empirically investigating the coming together of biological and engineering knowledge and practices. However, I have increasingly started to think that a normative agenda can emerge from empirical work of this type, because it cultivates a sensitivity to contingency and to epistemic imposition. For example, a study of synthetic biology shows that attempts to impose engineering ideals on living systems are often thwarted by the complexity of biology. It shows that “things could be otherwise”—that there are different ways of imagining how we can engage with the biological world, and different paths that can be taken. I think that “otherwising” is central not only to my own field of science and technology studies (STS), but also to anthropology, history and to the humanities more broadly. Once we identify the contingency of our commitments we render them open to change. Just showing that things can be different is potentially emancipatory. My aim in this paper is to explore how otherwising can be productive in developing a normative agenda for social scientific engagement with synthetic biology, and how it can contribute to the broadening of current bioethical debates.
Jane Calvert is a Reader in Science, Technology and Innovation Studies at the University of Edinburgh. Her current research, funded by a European Research Council Consolidator grant, focuses on attempts to engineer living things in the emerging field of synthetic biology, which raises intriguing questions about design, evolution and “life.” She is also interested the governance of emerging technologies, and in interdisciplinary collaborations of all sorts. She is a co-author of the interdisciplinary book Synthetic Aesthetics: Investigating Synthetic Biology's Designs on Nature, published by MIT Press in 2014.
Luis A. Campos (University of New Mexico) — “The Ghost of Asilomar”
The ghost of Asilomar haunts contemporary biotechnology. Synthetic biologists and their interlocutors frequently (and increasingly) refer to Asilomar as a touchstone for contemporary issues. They debate whether Asilomar was a “good” or exemplary event; recount the history of who did what and what it meant; and question whether “another Asilomar” meeting is necessary to deal with events in the development of synthetic biology today. In short, memories and folk histories are deployed and interpreted by contemporary actors (and their critics) building and contesting the emergence of synthetic biology. In this talk, forty-two years after the original Asilomar meeting, I will explore the interesting resonances between the historical Asilomar as a future-directed event, and synthetic biologists’ past-directed reflections on the putative ‘lessons of Asilomar’ for contemporary biotech.
Luis Campos is the Baruch S. Blumberg NASA / Library of Congress Chair of Astrobiology and Associate Chair of the History Department at the University of New Mexico. Trained in both biology and in the history of science, Campos’ scholarship brings together archival discoveries with contemporary fieldwork at the intersection of biology and society. He has written widely on the history of genetics and synthetic biology, and is the author of Radium and the Secret of Life (2015), and co-editor of Making Mutations: Objects, Practices, Contexts (2010). Campos also serves as Secretary of the History of Science Society, “the world's largest society dedicated to understanding science, technology, medicine, and their interactions with society in their historical context.”
Julia Diekämper (Museum für Naturkunde, Berlin) — “Let’s Talk About…Genome Editing”
There is, traditionally, little consensus concerning gene technology. Every new development provokes a variety of ethical, legal and social questions, each with a plurality of possible answers. At this point the discussion about new methods of genome editing does not differ much from former debates. However, a new trend can be observed, which seems to unite the regulatory and the scientific sides. Both recommend involving the public at an early stage in discussions about relevant developments and key questions—or, at least that is what numerous opinions and statements seem to suggest. The creation of new spaces of deliberation as well as calls for public participation in political decision-making processes about new technologies have become widespread in recent years. So the question is: why should the public be involved? What differentiates genome editing from astrophysics? In my talk I will have a closer look at different possibilities of participation on the occasion of genome editing. The research project GenomELECTION at the Museum für Naturkunde in Berlin, Germany will serve as my example. I will ask the question: Why can a place like a science museum be made fruitful for engaging the public in scientific production and regulation? I will present our project’s first findings and compare them to extant narrative strategies around biotechnology.
Julia Diekämper studied German philology and cultural studies at the University of Bremen, where she obtained her doctorate in 2011 with an analysis of Biopolitical Reproduction Discourse. She has been a lecturer at the University of Bremen (2008–2010), the HafenCity University Hamburg (2010–2015), the Humboldt University of Berlin (2011), the University of Greifswald (2013–2014) and the Academy of Arts of Berlin (since 2015). From 2007–2010 Julia was a member and employee of the Center of Gender Studies of the University of Bremen. Since 2010, she has been a research assistant at the Berlin-Brandenburg Academy of Sciences and Humanities, where among other things she given speeches at Brandenburg-area schools on agro-genetic engineering, and supervised the humanities student laboratory “Und Frieden auf den Feldern?” on the debate on agro-genetic engineering. Julia Diekämper also works as a freelance author for “Deutschlandradio Kultur.” Since October 2016, Julia Diekämper has been a member of staff of the communication science subproject of the joint research project “GenomELECTION,” funded by the German Federal Ministry of Education and Research.
Jeantine E. Lunshof (MIT Media Lab, Harvard Medical School Dept. of Genetics, and University Medical Center Groningen) — “The Point of Convergence: Humanities and Science at the Bench”
Developments in genomics and biological engineering are changing the world profoundly at an unprecedented pace. Disruptive changes are made in all areas, from fundamental research to technology applications and the practice of biomedicine. As a philosopher-ethicist on the work floor of the lab, I have been witness to the earliest stages of a number of discoveries that turned out to be groundbreaking. Discoveries can be the end of a long quest or they are made without intention: serendipitously or as a spark from a brilliant idea. I will focus on the point at which discoveries in the fundamental sciences break through and meet with fundamental questions in philosophy and ethics, and I will argue that this does not occur at a gap assumed between “Two Cultures,” but, on the contrary, that a groundbreaking discovery constitutes a point of convergence of science and humanities. Acquiring entirely new technological capabilities, in particular in genomics and biological engineering, leads us into territories where we need to revisit established concepts, terminology, and thresholds. Disruptive changes in the empirical world necessitate an inquiry into the validity and robustness of moral values and normative frameworks that build on empirical assumptions, e.g. about the origins of the human embryo, species integrity, the natural constant of the genetic code. I will use some recent, real-world breakthrough-discoveries in genomic science and biological engineering as examples to illustrate my argument about the powerful convergence of science and the humanities.
Jeantine Lunshof is a philosopher and ethicist. She is Research Scientist/Ethicist at MIT Media Lab, and Assistant Professor in the Department of Genetics, University Medical Center Groningen. Jeantine studied Philosophy and Tibetan Language & Culture at Hamburg University (Germany), and Philosophy, Ethics, and Health Law at the University of Amsterdam (Netherlands). She obtained her PhD at VU University Amsterdam with a thesis on the impact that developments in genomic sciences have on practical ethics and normative theory. Since 2006, Jeantine has been the ethics consultant to the Church lab at Harvard Medical School, Department of Genetics. In 2006, she developed the innovative model of Open Consent that forms the normative backbone of the Personal Genome Project. She held a prestigious Marie Curie Fellowship from 2013 till 2016. Her current research is on conceptual and normative issues in systems and synthetic biology, with focus on the impact of genome editing technologies. Jeantine is an Associate Faculty Member of the Harvard Center for Bioethics, and a member of the Synbio Group at the MIT Program on Emerging Technologies (POET). Together with George Church, she is co-instructor for the HMS graduate course “Conduct of Science” since 2013.
Krishanu Saha (University of Wisconsin-Madison) — “Editing Diseases in a Dish”
New advances in CRISPR gene editing and stem cell biology now permit the derivation of customized cell lines, tissues, organoids and animals to model human disease. For example, when derived from routine patient blood draws, patient-specific stem cell lines have been called “disease-in-a-dish” models. Such models have been developed for many rare/orphan diseases, as well as more common ones like diabetes, Huntington's, Parkinson's, muscular dystrophy and cystic fibrosis. This is a promising approach for the study of disease phenotypes at the cellular and molecular level, however, expectations placed on this emerging technology privilege the laboratory over the clinic as the site for making sense of disease, thereby distracting from the socially embedded meanings of disease and reorienting how the goals of medicine are imagined. The recent editing in and out of “disease ” in these engineered entities using genome engineering privileges the study of biological mechanisms that are amenable to therapeutic intervention. In this talk, I will identify and review the implications of this area of research for clinical approaches to disease. I will argue that there is a central place for the larger medical community and patients in the very construction of experimental research programs and the expectations placed thereon. By attending to the constellation of social factors that inform understanding, treatments and experiences of disease, these laboratory projects can be more effectively placed in the service of clinical and social goals, in both their research design and in the forms of innovation they claim to anticipate.
Krishanu Saha is an Assistant Professor of Biomedical Engineering and Medical History & Bioethics at the University of Wisconsin-Madison. His research interests are in gene-editing human stem cells for regenerative medicine. He leads a lab at the UW-Madison that is uniquely engaged with ethical and social implications of frontier biotechnologies. His lab is now funded by the NIH, NSF, and EPA to perform high-impact research on pluripotent stem cells, regenerative medicine, disease modeling and synthetic biology. He is a member of the National Academies' Forum on Regenerative Medicine. In addition to being a scientific leader in the stem cell engineering field, he is deeply engaged with the ethical and social implications of gene-editing, for example by co-authoring a recent piece in Issues in Science and Technology, and participating in the 2015 International Summit on Human Gene Editing and the 2016/17 OECD BNCT Workshops on Gene Editing. He is on the Executive Committees of the Stem Cell and Regenerative Medicine Center and the Robert F. and Jean E. Holtz Center for Science & Technology Studies at the UW-Madison.
Shobita Parthasarathy (University of Michigan) — “The Role of Intellectual Property in Managing the Impacts of CRISPR”
As CRISPR/Cas9 inches towards medical and social reality, experts, policymakers, and citizens are puzzling over how to control it. It promises enormous benefits for people with serious genetic conditions. But how can we ensure that it is accessible to these individuals while avoiding its use for widespread human genetic engineering? Thus far, most of the proposed interventions have focused either on regulating research or banning certain uses of the technology. In this talk, I suggest that we consider intellectual property-and more specifically, patent-systems as regulatory spaces for CRISPR/Cas9 and other emerging technologies. I argue that excluding these systems from our menu of regulatory options has been a hidden political decision that warrants scrutiny and re-evaluation. And, I discuss how patent systems can play a more central role in the shaping the regulation of these technologies. In this vein, I explore some concrete approaches to governing the moral and socioeconomic implications of CRISPR through intellectual property, with attention to their benefits and drawbacks.
Shobita Parthasarathy is Associate Professor of Public Policy and Women's Studies, and Director of the Science, Technology, and Public Policy Program, at University of Michigan. Her research focuses on the governance of emerging science and technology in comparative perspective. She is interested in how technological innovation, and innovation systems, can better achieve public interest and social justice goals, as well as in the politics of knowledge and expertise in science and technology policy. She is the author of numerous articles and two books: Patent Politics: Life Forms, Markets, and the Public Interest in the United States and Europe (University of Chicago Press, 2017) and Building Genetic Medicine: Breast Cancer, Technology, and the Comparative Politics of Health Care (MIT Press, 2007). Findings from Building Genetic Medicine influenced the 2013 US Supreme Court decision prohibiting patents on isolated human genes. She has advised several science and technology policymaking institutions, including the US Health and Human Services Secretary’s Advisory Committee on Genetics, Health, and Society; the Austrian Genome Research Program; the European Patent Office; and the US Government Accountability Office. She holds a Bachelor's degree in Biology from the University of Chicago and Masters and PhD degrees in Science and Technology Studies from Cornell University. To support her research, she has received grants and fellowships from the Woodrow Wilson International Center for Scholars, the American Council of Learned Societies, the UK Wellcome Trust, the German Max Planck Institute for Innovation and Competition, the American Bar Foundation, and the US National Science Foundation.