Ideas

'Shouldn't there be a law against that?': Facing our fear of genetic innovation

Professor Bartha Knoppers is the 2019 recipient of the Henry G. Friesen International Prize for excellence in health research. Once a scholar of surrealist poetry, she has now become a world-renowned voice and a prolific researcher in the field of medical ethics.

From cloning to AI, the 2019 Friesen Prize winner reflects on 40 years of genetic innovation

Professor Bartha Knoppers is the 2019 recipient of the Henry G. Friesen International Prize for excellence in health research. Her Friesen lecture, delivered in September 2019 at the University of Ottawa, is called 'Scientific Breakthroughs: The Prohibition Reflex.' (Patrick Doyle, Photographer, and Friends of CIHR)
Listen to the full episode53:59

Genetic experimentation and innovation immediately conjures up dystopian visions — just look at our predilection for movies and books about science gone terribly wrong. And then there's the tendency we humans have to resist change. So often when we hear news of a significant development in genomics, we reflexively ask: "Shouldn't there be a law against that?"

Bartha Knoppers, professor and director of the Centre of Genomics and Policy at McGill University, is all too familiar with this response. She refers to it as the 'prohibition reflex'. She says it may be natural, but it isn't necessarily helpful. Instead, she argues, we need to quell our initial fears about genetic innovation so that we can conjure a more fruitful response.  

"I'm not a prohibitionist. I think all these issues, especially from a human angle and a policy angle, are too complicated and moving in many different directions to have such an inflexible position that forever shuts down debate," Knopper told IDEAS host, Nahlah Ayed.

"There might be one or two discoveries yet that you might want to prohibit, but even stuff like nuclear — we have MRI machines and we have the bomb. So you have to think twice before you just say 'no'."

However, Knoppers added that human reproductive cloning is an example where a universal prohibition is close to becoming a reality.

'A new way of doing science'

Knoppers, a law professor by training, is the winner of the 2019 Friesen Prize for excellence in health research. She has witnessed nearly every innovation and debate in the world of genetics and reproductive technology, since the birth of Louise Brown, the first 'test tube baby', in 1978.

Louise Brown, who was the world's first in vitro fertilization baby, holds her own infant IVF twins Henry (left) and Antonia Veary during celebrations for Brown's 25th birthday in Bourn, England, in 2003. (Alastair Grant/Associated Press)

She was part of Canada's Royal Commission on new reproductive technologies (the Baird Commission) in 1989, and in 1997 she helped to draft UNESCO's declaration on the human genome and human rights

Knoppers closely followed the sequencing of the human genome. She says researchers around the world committed themselves to this single project and to sharing information in a way that hadn't been seen before.   

"It was inspiring because there were so many scientists who said, 'OK, I've got my lab, I've got my publications, I've got my tenure track … I'm going to concentrate on this, and we're going to do this together.' It was a new way of doing science."

Nowadays, she and her colleagues watch and respond to the latest developments in the field, from the spectre of genetic discrimination, to the advent of artificial intelligence and 'big data', to new gene-editing technologies like CRISPR. 

The challenges are pretty clear: contrary to the current ethical consensus, there's already been a case of twins being born in China whose genes were edited to prevent them from inheriting HIV. Professor Knoppers says this kind of rogue action on the part of scientists — and the attention this case has received — isn't good for the field. 

Biophysics researcher He Jiankui claims that he helped make world's first genetically-edited babies: twin girls whose DNA he said he altered. (Mark Schiefelbein/Associated Press)

"It's not good for scientists," Knoppers said. "It looks like they're lacking in professionalism, that the ethics committees are not doing their work, that all the self regulation and oversight has failed. For human gene editing, we can't have more laws than we already have; the problem is one of enforcement."

Protecting future opportunities

Professor Knoppers argues that the best way to preside over and regulate new genetic technologies is by applying human rights law.

"Maybe the time has come to activate what hitherto have been dormant human rights: the right to benefit from science, the right to health, the rights of the child... what about the rights of future generations? Is this what we need in the CRISPR debate, to wake up this right? All of these human rights are already enshrined in signed and ratified treaties and covenants. This makes them legally actionable." 

Knoppers hopes that that through a sustained application of human rights law, the prohibition reflex might give way to something new: its opposite. 

"We have to shift our focus from avoiding risks to protecting opportunities. Then maybe we could speak of an anticipatory reflex that guides us in making choices about how we regulate science with the needs of future generations in mind."
 



** This episode was produced by Sean Foley.

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