Title

Human Gene Editing and the Ethics of Enhancement

Publication Date:
Updated:

Collection Editor(s):

Collection Editor(s)
Name & Degree
Eric T. Juengst, PhD
Work Title/Institution
Professor of Social Medicine and Genetics, University of North Carolina (UNC) School of Medicine; Core Faculty, UNC Center for Bioethics

Introduction

Over the past decade, a new generation of precise and efficient gene editing techniques has brought new urgency and attention to the discussion of the ethics of human enhancement. In 2015, gene editing research in non-viable human embryos signaled that human applications were on the horizon which, in theory, could be aimed beyond disease treatment toward improvements upon normal human traits. In 2018, that prospect was given a touchstone case, when a scientist named He Jiankui announced that he had edited the genes of at least two human embryos that resulted in live births, intending to give them resistance to HIV. This episode provoked an international wave of policy discussion aimed at governing the trajectory of human gene editing research. It also underlined the importance of the debates over enhancement, by raising the question of whether providing superior resistance to HIV crossed the line between therapeutic and enhancement uses of gene editing—and if so, whether that mattered ethically. 

The literature of the ethics of human enhancement long predates the advent of the new gene editing techniques, and the current discussion builds on those foundations. A central…

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Over the past decade, a new generation of precise and efficient gene editing techniques has brought new urgency and attention to the discussion of the ethics of human enhancement. In 2015, gene editing research in non-viable human embryos signaled that human applications were on the horizon which, in theory, could be aimed beyond disease treatment toward improvements upon normal human traits. In 2018, that prospect was given a touchstone case, when a scientist named He Jiankui announced that he had edited the genes of at least two human embryos that resulted in live births, intending to give them resistance to HIV. This episode provoked an international wave of policy discussion aimed at governing the trajectory of human gene editing research. It also underlined the importance of the debates over enhancement, by raising the question of whether providing superior resistance to HIV crossed the line between therapeutic and enhancement uses of gene editing—and if so, whether that mattered ethically. 

The literature of the ethics of human enhancement long predates the advent of the new gene editing techniques, and the current discussion builds on those foundations. A central feature has been the distinction between interventions aimed at alleviating disease and interventions designed to improve upon normal traits in healthy people. The former have traditionally been accepted as addressing legitimate medical goals while the latter have been debated as either distortions of important values or as acceptable expressions of human freedom and creativity. The current literature has been dominated by debates over the conceptual merits of this distinction, and the introduction of new ways to think about human enhancement better suited to the gene editing era. These new approaches have coincided with an expansion of normative perspectives on the ethical questions raised by enhancement, bringing a range of important new arguments to the discussion of whether and how genetic enhancement might be morally problematic. These conceptual and normative developments are reflected in the wave of gene editing policy discussions that followed the He Jiankui episode. While these discussions typically recommend that non-therapeutic applications of human gene editing be given lower priority as research goals, they no longer draw a bright line between medical and non-medical “enhancement” applications. Instead, they endorse the need to bring a wider variety of voices into the governance process to deepen and enrich the ethical considerations that should guide the trajectory of human gene editing as the technology matures.  

This collection is designed to help scholars and students interested in reviewing the recent literature on gene editing and the ethics of enhancement, but it cannot do justice to the wealth of new work on this topic. The entries were chosen as representative examples of new threads in the discussion stimulated by the science of gene editing and based on their ability to provide, through their own references, useful guides to their topics for those interested in pursuing them further.

The research for this collection was supported by grant number 1 R01 HG010661 from the NIH ELSI Program.

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Foundations – History of a Debate
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Conceptual Issues – Considering Therapy v. Enhancement
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Normative Perspectives – Surfacing Values and Blind Spots
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Policy Reports and Reviews – The Case for & Shape of Human Genome Editing Governance
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ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.

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