Program on Science, Technology and Society at Harvard

Genome Editing and Human Dignity: Comparative Perspectives

September 10 - 11, 2020,
Virtual

Abstract

With generous support from the Robert Bosch Academy in Berlin, this series of meetings launched the work of the Global Observatory for Genome Editing.

The purpose was to seek input and advice from an international group of distinguished scholars, scientists, legal experts, policy practitioners, and civil society representatives who will inform the initial agenda for the Global Observatory for Genome Editing.

Session 1: Legal Definitions and Protections of the Human

Constitutional Foundations: How are varied conceptions of the human—for instance, of human rights, dignity and integrity— informing approaches to ethical evaluation and governance of biotechnology in different jurisdictions? What entitlements and obligations are associated with those conceptions? What are key areas of conflict, contestation or change within the jurisdiction(s) with which you are most familiar?

Regulatory Frameworks: How are different regulatory regimes and cultures approaching the regulation of human genome editing? What is the scope and limit of extant regulatory authority (e.g., safety and efficacy)? What ideas of public good, public welfare, state police powers, including protection of ethics and moral order, warrant or legitimize that authority? Are there perceived gaps in state regulatory powers?

Session 2: Public Engagement and Deliberation

The Public Voice: How has civil society been included or inserted itself into public debates? What forms of mobilization have occurred and where? With what consequences, if any? What constraints are placed on public engagement and deliberation (e.g., input only from “invited” publics, only through ethics committees, etc.)?

Silences and Exclusions: Which significant areas of convergence and divergence in participatory practices emerge from cross-jurisdictional comparisons? What gaps, if any, have been identified in current public discourse? Have any groups or interests been systematically excluded?

Session 3: Extant Institutions and their Limitations

National and International Bioethics: What role have national bioethics bodies played in framing and/or facilitating deliberation? What role have international bodies played in framing debates and developing consensus at supranational levels? How do they identify and convene relevant voices, and based on what authority? What major gaps exist in their jurisdiction, authority and capacity to influence policies?

Expertise and Democracy: Who are the recognized experts in this emerging domain of science and technology? What role have these experts played in shaping the terms and scope of public deliberation, whether at national or international levels? Through what principal forums or processes have they given guidance, and to whom? In what ways, if any, have expert judgments been subject to contestation and controversy? What tensions, if any, have emerged between scientific self-regulation and other forms of oversight?