J. Benjamin Hurlbut, Sheila Jasanoff, Krishanu Saha, Aziza Ahmed, Anthony Appiah, Elizabeth Bartholet, Françoise Baylis, Gaymon Bennett, George Church, I. Glenn Cohen, George Daley, Kevin Finneran, William Hurlbut, Rudolf Jaenisch, Laurence Lwoff, John Paul Kimes, Peter Mills, Jacob Moses, Buhm Soon Park, Erik Parens, Rachel Salzman, Abha Saxena, Hilton Simmet, Tania Simoncelli, O. Carter Snead, Kaushik Sunder Rajan, Robert D. Truog, Patricia Williams, Christiane Woopen. Building Capacity for a Global Genome Editing Observatory: Conceptual Challenges. Trends in Biotechnology, Volume 36, Issue 7, July 2018, Pages 639-641
A new infrastructure is urgently needed at the global level to facilitate exchange on key issues concerning genome editing. We advocate the establishment of a global observatory to serve as a center for international, interdisciplinary, and cosmopolitan reflection. This article is the first of a two-part series.
Building Capacity for a Global Genome Editing Observatory: Conceptual Challenges (Part 1 is freely available until the end of July 2018)
Building Capacity for a Global Genome Editing Observatory: Institutional Design (Part 2 will be freely available mid-July through the end of August 2018)
The technological revolution in genome editing has elicited significant concern about what it means for human dignity and integrity. New techniques like clustered regularly interspaced short palindromic repeats (CRISPR) promise to rewrite the code of life at the most fundamental molecular level with greater precision than ever before. Of innumerable potential applications, the most ethically challenging are those that would make heritable genetic alterations in human beings. The potential for editing the human germline has elicited international concern about the essence of human integrity and the norms that should guide and govern biology’s newfound editorial aspirations. At stake are questions of moral overreaching, responsibilities to future generations, and appropriate forms of deliberation in judging which biotechnological futures to welcome or reject on behalf of the entire human community.
Few would claim that mere acquisition of editorial capacity authorizes scientific hands to write whatever they please. The human futures now being imagined reach beyond the biological arrangements of nucleotide texts. They encompass the values – social and moral – of the forms of life that are foreseen by biology’s roving editorial eye. If genome editing has opened a ‘crack in creation’, the integrity of life and the shared norms that underwrite and safeguard it must not be allowed to slip carelessly into that opening.
Recognizing the need to catalyze a conversation on these issues, scientific leaders took some initial steps. In December 2015, the US National Academies, the Royal Society (of the United Kingdom and the Commonwealth), and the Chinese Academy of Sciences cohosted an International Summit on Human Gene Editing. At the end of the Summit, the Organizing Committee affirmed that genome editing technologies pose novel governance challenges because they affect the future of the human species. They noted it would be irresponsible to proceed with clinical germline genome editing until there is a demonstration of ‘safety and efficacy’, a ‘broad societal consensus about the appropriateness of the proposed application’, and corresponding regulatory oversight. They called upon the ‘international community’ to ‘strive to establish norms’ for guiding the uses of this technology and noted the need for an ‘international forum’ embracing ‘a wide range of perspectives and expertise’. More recently, reports of gene editing in human embryos have elicited further calls for transnational cooperation.
These assertions raise important questions: To what extent are existing scientific and political institutions capable of initiating the forms of deliberation that the prospect of editing life demands? Are these institutions qualified to ask the right questions? What are the respective rights, roles, and responsibilities of scientific experts, policymakers, publics, and scholars in working toward a ‘broad societal consensus’? What new modes and mechanisms of participation, deliberation, and representation are needed?
We summarize the perspectives of an international, interdisciplinary group of scientists, social scientists, ethicists, philosophers, religious thinkers, legal scholars, and policy practitioners on these issues. Grouped under each salient word in the Summit’s call for a ‘broad societal consensus’ are highlighted concerns about the terms of deliberation, the need for ongoing interdisciplinary exchange and global deliberation on developments at this rapidly moving frontier, and the implications for applications of transformative biotechnologies to future lives, with uncertain impacts across generations.