Authors
1
Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada
2
Genomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Unity Health Toronto, ON, Canada
3
Genomics Health Services Research Program, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Unity Health Toronto, ON, Canada; Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON, Canada
4
Department of Bioethics, The Hospital for Sick Children, Toronto, ON, Canada
5
Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada; Division of Prenatal Diagnosis and Medical Genetics, Sinai Health System, Toronto, ON, Canada
6
Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada; Program in Genetics and Genome Biology, The Hospital for Sick Children Research Institute, Toronto, ON, Canada; Department of Pediatrics, University of Toronto and The Hospital for Sick Children, Toronto, ON, Canada
7
Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada; Division of Prenatal Diagnosis and Medical Genetics, Sinai Health System, Toronto, ON, Canada; Department of Pediatrics, University of Toronto and The Hospital for Sick Children, Toronto, ON, Canada
8
Department of Molecular Genetics, University of Toronto, Toronto, ON, Canada; Department of Genetic Counselling, The Hospital for Sick Children, Toronto, ON, Canada
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Document Type : Original Article
Abstract
CRISPR has initiated an ethical debate surrounding human gene editing (HGE). Somatic gene editing (SGE) is advancing through clinical trials, while germline gene editing (GGE) remains controversial. Stakeholder perspectives suggest GGE may be acceptable for severe conditions. However, what constitutes a severe condition remains unclear. In a Canada-wide qualitative study, we explored genetics professionals' views on what kind of conditions, if any, should qualify for GGE, as well as ethical implications of HGE overall. Participants (n = 12) expressed support for SGE, while GGE was associated with safety and ethical concerns. Participants characterized GGE as a “Pandora’s box,” as it may lead to irreversible societal changes. Despite concerns, participants supported GGE for “severe” conditions. To classify severity, participants suggested referencing preimplantation genetic diagnosis (PGT-M) guidelines. This study provides insights into the acceptability of HGE and a novel need for the development of Canadian PGT-M guidelines, which currently do not exist.
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