A bioethicist-in-residence at the University of Oregon on Thursday, Feb. 18, said the time is now to institute a temporary halt on research into editing the human genome for future generations
Françoise Baylis, the 2020-21 Wayne Morse Chair at the school's Wayne Morse Center for Law and Politics said in a virtual discussion hosted by the City Club of Portland that the long-hypothetical discussion of crafting "designer babies" is now literally a reality.
The question of whether genetically engineering human beings should continue without restrictions or regulation is too important, she said, to be left to the scientists doing the work.
"This is a technology for the elite," Baylis said. "It's a technology for the 1%. What that will mean over time is that people who already have considerable privilege in terms of wealth and power will now be able to inscribe that privilege in their DNA."
At issue is technology known as CRISPR, or gene editing device, pioneered in 2012 by two women, Jennifer Doudna and Emmanuelle Charpentier, who last year were recognized with the Nobel Prize in Chemistry. Baylis wrote a book on the subject.
"CRISPR technology is the technology that allows scientists to make changes to DNA, including human DNA," said Baylis, a researcher from Nova Scotia who has been prominent in the gene-editing debate. "And they do this by being able to cut the DNA, and then delete information that they don't want in that strand of DNA or add information that they think is important for that strand of DNA to work properly. Or just simply to make a cut and modify the functioning of the genes."
Baylis read two passages from her book on the subject.
The problem, she said, is that the technique can be used to treat living humans for a disease or to alter future generations with genetic changes passed on for generations to come. And over time, the two may not look much different, with those with the means to do so creating "superhuman" abilities.
"We need to worry about a world we're building where there will be the haves and have-nots, those who can access this technology, and those for whom it will be unavailable for any kind of reason," Baylis said.
Already, three "designer babies" have been born, with genes edited so that in theory they are resistant to HIV. The Chinese scientist who spearheaded the work was sentenced to three years in prison in December 2019.
Larry Wallack, a former public health professor and dean at the Portland State University College of Urban & Public Affairs, challenged Baylis to address the plight of parents who would do anything to spare their children a congenital disease.
"If that feeling is so great," he said, "why would you advocate a moratorium to slow down the science that would respond to the prayers, the cries, the aspirations that these people have for their current children and their future children? Why go slower? Why not go faster?"
Baylis responded: "I don't have any reservations about investing time, talent and money to try to develop therapies for existing patients who are suffering. But I think it's a different category of intervention to try to change reproductive tissue, because you're not treating a patient in that context. ... The human genome, in important respects, belongs to all of us. And so we should all have a say."
To Baylis, that requires having a higher level of debate, a global one that considers a variety of perspectives.
"We … will then have dismantled the idea that this is decision-making for an elite few, whether that elite few is just the scientific community, or those who are extremely wealthy and can pay for whatever it is that they want, or whether it's a certain group of policymakers," she said. "I'm trying to push that decision-making down to all of us. ... We have to take responsibility to become interested, to become engaged, to learn to express our views."
XRAY.FM and Pamplin Media Group are media sponsors of the event. Called "State of Being: The Promise and Peril of Emerging Genetic Technologies," the discussion can be viewed here.
You count on us to stay informed and we depend on you to fund our efforts. Quality local journalism takes time and money. Please support us to protect the future of community journalism.