News and Events : 2016 : January

Human genome editing Framing genome editing policy requires setting thresholds of acceptability

Human genome editing for research has made great strides in recent years yet raises socio-ethical and policy questions surrounding the modification of the human germline.

Three researchers from the Centre of Genomics and Policy at McGill University (Canada), Rosario Isasi, Erika Kleiderman and Bartha Maria Knoppers, suggest in a ‘Perspectives’ article in Science magazine that policy makers could be guided by the model that has served to develop policies regulating pre-implantation genetic diagnosis after in vitro fertilization.

A senior author for the article, Rosario Isasi, JD, MPH, is a recent University of Miami Miller School of Medicine faculty recruit joining the Department of Human Genetics, the Institute for Bioethics, the John P. Hussman Institute for Human Genomics and the Interdisciplinary Stem Cell Institute, in January 2016.

Gene editing is a powerful tool offering great scientific and therapeutic potential. Countries around the world are exploring the need for policies to manage gene editing, with the United Kingdom filing the first national research application for licensing genome editing in human embryos. While this research has great potential to prevent devastating diseases, many disagree with this approach and argue that germline editing should be banned.

Pre-implantation genetic diagnosis (PGD), used to identify genetic conditions in embryos and prevent certain diseases from being passed on to the child, “was first regarded as highly controversial and now is mainly governed within the general biomedical research context,” the researchers write. Many countries allow genetic testing in preimplantation embryos, subject to medically determined requirements such as the gravity of the genetic condition and a substantial risk of occurrence.

Prof. Isasi noted that “we should be careful of the language used when drafting policy. Terms are not just abstract concepts. They are what patients afflicted by, or at risk for disease, are hearing in reality. They have deep personal implications. Policy should always reflect the values of each country”.

“Many questions still remain to be addressed,” with regard to genome editing, the researchers add. For example: Are there potential defensible uses for genome editing so as to select, or de-select certain human traits? Are there any limits for non-medical interventions?

Still, they conclude, “Public acceptance may change as the benefits of genome editing emerge for disease prevention”.