Back to Basics: Application of the Principles of Bioethics to Heritable Genome Interventions
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Back to Basics: Application of the Principles of Bioethics to Heritable Genome Interventions Landon J. Getz1 · Graham Dellaire2,3 Received: 31 July 2019 / Accepted: 21 May 2020 © Springer Nature B.V. 2020
Abstract Prior to their announcement of the birth of gene-edited twins in China, Dr. He Jiankui and colleagues published a set of draft ethical principles for discussing the legal, social, and ethical aspects of heritable genome interventions. Within this document, He and colleagues made it clear that their goal with these principles was to “clarify for the public the clinical future of early-in-life genetic surgeries” or heritable genome editing. In light of He’s widely criticized gene editing experiments it is of interest to place these draft principles in the larger ethical debate surrounding heritable genome editing. Here we examine the principles proposed by He and colleagues through the lens of Beauchamp and Childress’ Principles of Biomedical Ethics. We also analyze the stated goal that the “clinical future” of heritable genome editing was clarified by He and colleagues’ proposed principles. Finally, we highlight what might be done to help prevent individual actors from pushing forward ahead of broad societal consensus on heritable genome editing. Keywords Heritable genome editing · CRISPR/Cas9 · Autonomy · Justice · Beneficence and non-maleficence Curiosity and the intent to find cures for disease are potent drivers of biomedical science. However, the valuing of “being first” in scientific publishing—a cultural trope that is doggedly persistent even in the twenty-first century—can often result in * Graham Dellaire [email protected] Landon J. Getz [email protected] 1
Department of Microbiology and Immunology, Faculty of Medicine, Dalhousie University, PO Box 15000, Halifax, NS B3H 4R2, Canada
2
Department of Pathology, Faculty of Medicine, Dalhousie University, PO BOX 15000, Halifax, NS B3H 4R2, Canada
3
Department of Biochemistry and Molecular Biology, Faculty of Medicine, Dalhousie University, Halifax, NS, Canada
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a failure of the researcher to reflect on the ethical and societal consequences of their work beyond the study.1 Lack of ethical training and literacy can make these issues worse, as those involved in the research are less likely to be aware of the negative consequences of their actions. The social impacts of CRISPR/Cas9 gene editing technologies have gained significant attention in part due to the remarkable speed of the development of these technologies for use in humans (Doudna 2020; Salsman and Dellaire 2017). Less than five years after its first reported use in human embryos, MIT Technology Review reported in November 2018 that CRISPR/Cas9 had be used by Dr. He Jiankui to edit the germline of two girls born in China (Liang et al. 2015).2 Three days later, this news was confirmed by He himself at the Human Genome Editing Summit in Hong Kong.3 He was attempting to edit the CCR5 gene in embryos destined for transfer to a human host
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