Opinion: Canada's criminalization of gene-editing research went too far, but consideration of easing restrictions should happen through an open, public process
When a scientist announces the opening of a new laboratory, it doesn’t ordinarily make news around the world. But Chinese biophysicist He Jiankui is no ordinary scientist.
He’s announcement at the end of November came just seven months after he completed a three-year prison sentence for practising medicine illegally. At issue was He’s 2018 YouTube announcement that he had created the world’s first gene-edited babies.
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As details became clear, scientists and lawmakers inside and outside China condemned He’s actions, and he was ultimately fired, fined and sentenced to prison. Gene editing also received a lot of negative press, with the usual stories about designer babies flooding the media. He’s new announcement could result in a repeat of the hysteria.
Indeed, stories raising the spectre of eugenics led Canada to prohibit human gene editing long before He created his designer babies. He employed a technique known as CRISPR, short for clustered regularly interspaced short palindromic repeats, which acts like a pair of scissors that allows scientists to edit parts of the human genome.
He used CRISPR to edit the genes of twin embryos whose father was living with HIV. By disabling a gene that helps HIV to enter cells, he reduced the risk that the twins would contract the virus.
That sounds like a beneficial alteration, but He’s actions were profoundly unethical since CRISPR can result in unexpected and unpredictable effects. For example, while editing an undesirable gene, CRISPR can produce changes to other parts of the genome — commonly known as “off target effects” — with potentially serious consequences.
The twins are now several years old and face an uncertain future, but will likely be closely monitored for the rest of their lives, not only to protect their health but that of their children should they choose to have any. The scientific experiment that began their lives will therefore continue as long as they live.
But gene editing itself could also be a casualty of He’s actions. Sensational stories about designer babies often result in legislative overreach, whereby a particular technology is banned outright to prevent someone from using it unethically.
That’s exactly what happened in 2004, when Canada’s Assisted Human Reproduction Act was enacted shortly after the world was transfixed by the Raelians’ 2002 claims of having created the world’s first cloned baby — named Eve, of course.
Among other things, the law prohibits anyone from using human gene editing in clinical applications, much as He did. But it bans much more than that, as it also criminalizes gene editing for research purposes if the alteration is capable of being transmitted to descendants — that is, if it involves editing germ cells such as sperm and eggs (germ line gene editing).
The criminal ban represents an unfortunate overreach since germ line gene editing holds great promise, and could one day lead to the elimination of HIV and a host of other genetic conditions, including cardiovascular diseases and neurodegenerative disorders like Alzheimer’s and Parkinson’s.
And while talk of designer babies raises fears that gene editing will result in a future society of genetic haves and have nots, it could also produce the exact opposite result by acting as therapy rather than enhancement.
Gene editing could, for example, target diseases that disproportionately affect members of certain ethnic groups, such as Tay Sachs disease among Ashkenazi Jewish and French Canadian populations. But we’ll never know if that potential will be realized if scientists aren’t even able to conduct research.
Many scientists and bioethicists have condemned the prohibition on research, and in 2017, McGill University’s centre of genomics and policy produced a Consensus Statement advocating changing the Assisted Human Reproduction Act.
The statement invokes several international instruments, including the Universal Declaration on Human Rights and the International Covenant on Economic, Social and Cultural Rights, which explicitly protect the right to “share in scientific advancement and its benefits.”
The blanket ban on germ line gene-editing research risks compromising that right, and the statement further argues that genetic research ought to be subject to regulatory oversight rather than criminalization. To that end, the statement suggests the law distinguish between “research and clinical practice” by permitting research on human germ cells and early stage embryos.
The law specifically calls for a review five years after its enactment, but 18 years and numerous scientific advances later, the law has seen few updates. In 2019, Ottawa did promulgate some regulations under the act, but they pertain largely to sperm and egg donations, not to genetic research on germ cells.
The feds are now reportedly working on updating the act, but it’s not clear what, if any, changes will be implemented. And that’s a problem: Any changes ought to be made, not in the privacy of bureaucrats’ offices, but after an open, public consultation.
After all, genetic research doesn’t just concern the future of this or that individual — it concerns the future of everyone. Furthermore, by granting us the ability to alter the human genome, the power to create and destroy, it concerns the future of the human species. And if anything is worthy of public input, it’s the future of us.