Since the adoption of the Assisted Human Reproduction Act in 2004, further debate on the policy implications of reproductive and genomic technologies has been largely absent in Canada. The criminal law approach that this Act espoused may well be partly responsible for such a lack of public discourse and political will. The arrival of genome editing techniques that can delete or modify the human genome is challenging such complacency, however, since 2016, a group of jurists from across Canada along with other stakeholders including patients have begun to study not only the need for reform but also for further clarification in the interpretation of the prohibition of human germline modification so as to allow basic research. What has happened to the dormant human right of “everyone to enjoy benefits of scientific progress and its applications”? (ICESCR, (1976) art. 15).
Bartha Maria Knoppers is a Full Professor, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy of the Faculty of Medicine at McGill University. She is the founder of the Public Population Project in Genomics (P3G) and CARTaGENE Quebec’s population biobank (2007 - ). Since 2005, she has been active in Canadian Stem Cell policy and has chaired the Ethics Working Party of the International Stem Cell Forum (2005-2015). Furthermore, she is Chair of the Ethics and Governance Committee of the International Cancer Genome Consortium (2009-2017), as well as of the Ethics Advisory Panel, WADA (2015- ). She is one of the co-founders of the Global Alliance for Genomics and Health (2013- ) and Co-Chair of its Regulatory and Ethics Working Group. In 2015-2016, she was a member of the Drafting Group for OECD’s Health Data Governance Policy and gave the prestigious Galton Lecture in November 2017. She holds four Doctorates Honoris Causa and is a Fellow of the American Association for the Advancement of Science (AAAS), the Hastings Center (bioethics), the Canadian Academy Health Sciences (CAHS), and the Royal Society of Canada. She is also an Officer of the Order of Canada and of Quebec.