CRISPR Gene-Therapy: A Critical Review of Ethical Concerns and a Proposal for Public Decision-Making

Abstract

CRISPR is currently viewed as the central tool for future gene therapy. Yet, many prominent scientists and bioethicists have expressed ethical concerns around CRISPR gene therapy. This paper provides a critical review of concerns about CRISPR gene therapy as expressed in the mainstream academic literature, paired with replies also generally found in that literature. The expressed concerns can be categorised into three types depending on whether they stress risk/benefit ratio, autonomy and informed consent, or concerns related to various aspects of justice. In the reviewed literature, we found no intrinsic objections to CRISPR gene therapy, even though many such objections were present in discussions of gene editing in the 1990s. The paper then proposes a brief outline for a practically applicable moral framework for public decision-making about CRISPR gene therapy and suggests how such a framework might be supported. We also suggest that this framework should govern public engagement about CRISPR gene therapy in order to reduce the risk that we make decisions about CRISPR gene therapy based on misperceptions, inflated views of risk, or unreasonable moral or religious views. Résumé Abstract CRISPR est actuellement considéré comme l’outil central de la future thérapie génique. Pourtant, de nombreux scientifiques et bioéthiciens de renom ont exprimé des préoccupations éthiques concernant la thérapie génique CRISPR. L’article présente un examen critique des préoccupations concernant la thérapie génique CRISPR telles qu’elles sont exprimées dans la littérature académique courante, ainsi que les réponses que l’on trouve généralement dans cette littérature. Les préoccupations exprimées peuvent être classées en trois catégories selon qu’elles mettent l’accent sur le rapport risque/bénéfice, l’autonomie et le consentement éclairé, ou les préoccupations liées à divers aspects de la justice. Dans la littérature examinée, nous n’avons trouvé aucune objection intrinsèque à la thérapie génique CRISPR, même si beaucoup de ces objections étaient présentes dans les discussions sur l’édition de gènes dans les années 1990. Cet article propose un bref aperçu d’un cadre moral applicable en pratique pour la prise de décision publique sur la thérapie génique CRISPR, et suggère comment un tel cadre pourrait être soutenu. Nous suggérons également que ce cadre devrait régir l’engagement public sur la thérapie génique CRISPR afin de réduire le risque que nous prenions des décisions sur la thérapie génique CRISPR sur la base de perceptions erronées, de vues exagérées du risque ou de vues morales ou religieuses déraisonnables. CRISPR is currently viewed as the central tool for future gene therapy. Yet, many prominent scientists and bioethicists have expressed ethical concerns around CRISPR gene therapy. This paper provides a critical review of concerns about CRISPR gene therapy as expressed in the mainstream academic literature, paired with replies also generally found in that literature. The expressed concerns can be categorised into three types depending on whether they stress risk/benefit ratio, autonomy and informed consent, or concerns related to various aspects of justice. In the reviewed literature, we found no intrinsic objections to CRISPR gene therapy, even though many such objections were present in discussions of gene editing in the 1990s. The paper then proposes a brief outline for a practically applicable moral framework for public decision-making about CRISPR gene therapy and suggests how such a framework might be supported. We also suggest that this framework should govern public engagement about CRISPR gene therapy in order to reduce the risk that we make decisions about CRISPR gene therapy based on misperceptions, inflated views of risk, or unreasonable moral or religious views.