OCT 03, 2019 1:30 PM PDT

Re-examining the ethical & regulatory dimensions of gene editing in the wake of the "CRISPR babies" scandal

Presented at: CRISPR 2019
C.E. Credits: P.A.C.E. CE Florida CE
Speaker
  • Academic Associate / Lawyer, Centre of Genomics and Policy, McGill University
    Biography
      Erika Kleiderman is a lawyer and an Academic Associate at the Centre of Genomics and Policy (CGP) at McGill University. She holds a civil law degree (LL.B.) from the Université de Montréal, as well as a B.Sc. in Psychology from McGill University. She was called to the Quebec Bar in 2014. Currently, her research deals with the ethical, legal, and social implications surrounding access to data and genetic information, biobanking, and the regulation of stem cells, regenerative medicine, and new reproductive technologies. Erika is engaged in the stem cell and regenerative medicine community through her involvement with the Stem Cell Network's Trainee Communications and Training & Education Committees, as well as through her coordination role in the pan-Canadian initiative aimed at assessing the adequacy of existing regulatory frameworks and considerations for reframing the Assisted Human Reproduction Act, in light of evolving reproductive technologies. She is also the Coordinator of the Canadian International Data Sharing Initiative (Can-SHARE) and the Access Officer of the Canadian Partnership for Tomorrow Project (CPTP), for which she has been actively involved in the development of controlled data and biosample access documentation and operating procedures. Erika is also interested in the potential applications of gene editing for performance enhancement (gene doping), as well as the implications of gene therapy and enhancement in minors within a sporting context. She is also a member of the McGill University Health Centre Research Ethics Board.

    Abstract

    Over the last decade, the policy and regulatory trajectory of genomic and reproductive technologies has been a checkered one. Approaches around the world range from constitutional and criminal prohibitions, to statutory intervention, moratoria, or, professional guidance sometimes combined with regulatory oversight. These debates have been reignited following the announcement of the births of the “CRISPR babies” back in November 2018. They raise a range of ethical, legal and social issues that can in turn have an impact on how we choose to regulate and oversee disruptive technologies. In this presentation, I will begin by providing an overview of the current international legal and policy landscape surrounding heritable genome editing. Then, I will present some of the ethical failures or shortcomings of the “CRISPR babies” scandal and the steps that have been taken to further the discussion following this, both in China and internationally. I also discuss the impact of this event for Canada, and conclude by considering questions surrounding the feasibility of moratoria in this context and more broadly, ‘where do we go from here’.

    Learning objectives:

    1. Gain a better understanding of the legal and regulatory frameworks surrounding heritable genome editing.
    2. Highlight key ethical failures arising in the wake of the “CRISPR babies”.
    3. Consider important elements of a responsible translation pathway regarding potential clinical applications of human genome editing.
    4. Consider the potential impact of a moratorium on the advancement (or not) of the field.


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