Examining the ethical and governance implications of human gene editing technologies

May 2, 2017
By Hilton Simmet

Presenting before an interdisciplinary audience Thursday afternoon at Harvard’s Tsai Auditorium, Dr. Buhm Soon Park, Professor of History of Science and Policy at Korea Advanced Institute of Science and Technology, showed a slide of Édouard Manet’s Races at Longchamp. Each new technology, he explained, brings the thought that we are in a race: if “we” don’t do it first, somewhere, somehow, someone else will. That technology involves a horse race among scientists and nations was but one of the ideas critiqued at “Editorial Aspirations: Human Integrity at the Frontiers of Biology,” a three-day conference on April 26-28 co-organized by the Program on Science, Technology and Society (STS) at Harvard Kennedy School (HKS) and the Center for Biology and Society at Arizona State University (ASU). The goal was to examine the ethical and governance implications of human gene editing technologies. To steer the race, one has to understand its context, including the spectators shown in Manet’s classic work. The event brought together a stellar cast of scientists, social scientists, ethicists, religious thinkers, legal scholars and policy practitioners to do just that. 

According to STS Program director Pforzheimer Professor of Science and Technology Studies Sheila Jasanoff ‘64, human genome editing touches upon fundamental questions of human integrity, rooted in the cultural, legal, moral, and religious ideas that are foundational for most societies. In December 2015, leaders of the International Summit on Human Gene Editing held in Washington, DC concluded that an international forum was needed to reach a “broad societal consensus” on the applications of these techniques. The Harvard workshop took up this challenge by looking more deeply into the societies that are too often treated as mere spectators to inevitable advances of technology. Participants reflected together on existing modes of deliberation and representation; the rights, roles, and responsibilities of scientific experts, policy makers, and publics in such processes; the adequacy of currently available scientific and political institutions; and lessons from prior efforts to govern emerging technologies.

An opening panel on Wednesday night brought together genome editing pioneers George Church (Ph.D. ’84) and Feng Zhang ’04 along with Harvard Law School’s Glenn Cohen (J.D. ’13), NYU philosopher Anthony Appiah, and Jasanoff. Conference co-organizer, ASU’s Benjamin Hurlbut (Ph.D. ’10), introduced the discussion. Church and Zhang each spoke of the potential and problems of CRISPR-Cas9, the gene editing tool at the center of this technological race. Zhang compared CRISPR-Cas9 with a Microsoft Word cursor, a tool that enables one to select, remove, and replace any segment within a DNA sequence. Genome editing, which is becoming increasingly precise, is already a powerful tool for developing new drugs and synthetic or genetically modified organisms, enabling great advances in agriculture and beyond. 

Still, there are risks. Church spoke of the problem of unequal access in using such technologies, a risk that existing regulatory processes do not address, while Zhang noted that “gene drives” could change the makeup of an entire species over several generations, irrevocably transforming both species and ecosystem. Cohen described two narratives for CRISPR-Cas9: either as a novel technology full of wonder, possibility, and risk; or as essentially similar to many technologies that have come before, and most likely subject to different responses across national legal cultures. Jasanoff pointed out that such narratives about scientific advances frequently ignore the connections of science to other social purposes, through ties to technology, money, politics, and culture. Taking a more existential view, Appiah commented that such technologies, by enhancing human capabilities, might diminish our urge to do the best we can with what life has given us. 

Four panels on Thursday took these themes further. Beginning with the topic of “Human Life and Law,” theologians, lawyers, and practicing ethicists emphasized that multiple anthropologies of dignity, whether those of the Catholic Church, the Council of Europe, or the UN Human Rights Committee, are essential for human flourishing. Columbia Law School’s Patricia Williams (J.D. ’75) worried about legal discourses around biotechnology that exclude considerations of human dignity and experience. Distinguished scientists, including Harvard Medical School Dean George Q. Daley ’82 and MIT’s Rudolf Jaenisch and Kevin Esvelt, addressed “Scientific Possibilities, Concerns, and Responsibilities,” highlighting how the pursuit of beneficial therapies might get derailed by pressures to enhance humans rather than cure disease. Esvelt stressed the need for transparency in gene drive research, noting that public suspicion could turn even a minor accident into a disaster, setting back research by decades.  

The afternoon featured two more panels addressing “Mechanisms of Deliberation and Oversight” and “What Role for Publics?” While some praised the UK’s “successful” regulation of mitochondrial replacement therapy, one presenter feared that “cultural harms,”—the broader and longer-term social consequences of biotechnologies—have been both understudied and overlooked. Others called for work at the international (UN, WHO, Professional Academic Societies), national (Academies of Science, OSTP, President’s Bioethics Council), and local (IRB, ESCRO) levels to allow diverse publics to review and discuss these technologies in a spirit of “friendship” and “kindness.” Hurlbut insisted that governing technology is fundamentally a problem of democracy. He criticized the “linear model” of innovation for empowering experts to define when science and technology do or do not warrant public scrutiny.

Organizers and participants met on Friday morning for a final roundtable on “Constituting a Cosmopolitan Ethics.” Here, discussion focused on how an international forum might work to determine the directions of future research and enable a “broad societal consensus.” While Harvard bioethicist Daniel Wikler questioned the effectiveness of current ethical rveiew mechanisms, University of Chicago anthropologist Kaushik Sunder Rajan suggested that we need to understand deep differences in economic and technological power when crafting norms for the international community. The attendees anticipate creating a forum and future gatherings to discuss these questions. When humankind has the ability to edit its own genome, how will it decide its future? The answer, as Jasanoff and Hurlbut noted in conclusion, will have as much to do with who sits around such roundtables as with who can run in the race. 

Human genome

Editing the human genome touches upon fundamental questions of human integrity, rooted in the cultural, legal, moral, and religious ideas that are foundational for most societies.

 


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