Patrick Bedford is the new Manager of Clinical Translation and Regulatory Affairs at CCRM. He holds a Master’s Degree in Bioethics and Health Law, and has over 10 years of experience applying federal regulations to emerging biotechnologies in Canada.
Back in August, I had the pleasure of attending a gene editing/CRISPR workshop, hosted by the Stem Cell Network and McGill University’s Centre of Genomics and Policy, to discuss a Canadian position on this contentious issue. A white paper will share the findings from this workshop, but, in the meantime, this article provides insight that may be worth considering when moving forward.
Before I attended the workshop in Ottawa, I reviewed material the organizers prepared for participants and it struck me that scientists, whether you find them brave or perhaps reckless, are a little like children who are compelled to check their closet looking for the boogeyman, just to see if he’s there.
Or, to put it in another way, their curiosity makes them unable to turn away from a train wreck or to stop wiggling a loose tooth before it is ready to fall out. They just can’t help themselves.
I think that these analogies, albeit simplistic, may be worth keeping in mind while we (Canadians) consider how we should react to emerging technologies.
There are many reasons to believe, despite legitimate fears of negatively affecting humankind, that scientists somewhere will pursue gene editing tools that will significantly affect future generations. It is not a question of if they will, but when it will happen. Observations about natural human curiosity, and prior examples of what has occurred in labs around the world, support these beliefs.
In time, gene editing will directly impact everyone as gene edits are passed on to future generations. Let’s acknowledge this is going to happen and figure out a plan of action if it turns out the boogeyman exists.
Around the world, leading scientists, ethicists, lawyers and decision-makers keep meeting to discuss policy directions focused on gene editing technologies, but the content of these discussions (and their decisions) are not entirely new. As described in an article by David Baltimore, Mendellian research findings first prompted analogous fears in the early 1900s (think Huxley’s “Brave New World”), which were renewed sometime around the 1970s when crude gene manipulation techniques emerged (including recombinant DNA applications).
Are we as a society any closer to knowing how to make policy decisions in the face of uncertainty? Has our application of the precautionary principle improved to the point where we now avoid unnecessary delays?
The best policy approach to emerging technologies, such as gene editing, may involve:
(1) itemizing all the steps in the scientific process that should be taken to identify and mitigate potential risks
(2) putting regulatory enforcement in place to make those steps mandatory
(3) discussing concrete actions that can be taken when a line has been crossed.
Scientists are hardwired to push boundaries in their pursuit of progress. Who doesn’t want to see an end to Alzheimer’s disease, for example, by modifying specific genes if that is possible? Let’s encourage the research and communicate specific stages of development that must be achieved before moving on.
In addition to explicitly identifying clear scientific milestones for gene editing and making them mandatory, Canada should also engage and work with countries in an attempt to manage the actions in the international community. There are incentives for certain jurisdictions to move into later stages of development before important milestones are met. Pushing ahead could be faster, cheaper and easier, and result in rapid discovery that will help people or make money. We need to agree that this issue is important enough for our government to invest an appropriate amount of time and energy into the necessary policy developments.