Finding consensus on rewriting the human genome

Illustration of two yellow pencils in the form of a double helix against a stark background.

Finding consensus on rewriting the human genome

Dalhousie University’s Françoise Baylis’ work at the intersection of health, bioethics and public policy takes on new urgency in an era when genetic modification of human beings is moving from the realm of possibility into reality
February 8, 2016

Like most technologies, our ability to manipulate and alter DNA is becoming steadily more sophisticated. But just because we can do something, does that mean we should? Perhaps more importantly, who gets to decide?

“When what you’re talking about is modifying the species, aren’t we all allowed to be part of the conversation?,” asks ethicist Françoise Baylis, who holds the Canada Research Chair in Bioethics and Philosophy at Dalhousie University.

About a decade ago, Baylis used funding from CFI to create an interdisciplinary research space at Dalhousie to enable faculty, postdoctoral fellows and graduate students to work collaboratively on questions at the intersection of health, bioethics and public policy. The team — now working under the banner of Impact Ethics — examines everything from assisted reproductive technologies to novel genetic techniques.

Recently, a new method known as CRISPR/Cas9 has injected urgency into the conversation around genetic modification. CRISPR/Cas9 uses enzymes isolated from certain bacteria to delete or insert DNA at any specified point in the genome. Compared to previous techniques, CRISPR/Cas9 is more effective, more accurate, and less expensive.

“Genetic modification of humans was previously understood to be within the realm of possibility, but on a distant horizon,” says Baylis. “That horizon now appears to be much closer.” Some hope that CRISPR/Cas9 will lead to breakthroughs in the fight against cancer or other diseases with a genetic component. Others worry about the possibility of “designer babies” or the introduction of artificial changes into the human gene pool.

In April 2015, a team of Chinese scientists reported the first use of CRISPR/Cas9 on human embryos. Though the embryos were non-viable — they had an extra set of chromosomes and could not have resulted in a live birth — the publication was controversial. In response, the U.S., U.K. and Chinese academies of sciences invited Baylis and 11 other experts to convene the International Summit on Human Gene Editing, held last December in Washington, D.C.

In contrast to previous meetings on the topic, Baylis and her colleagues used online video streaming and social media to ensure that the conference was open and inclusive of as many groups as possible. “We had about 500 registered participants, and about 3,000 web viewers from around the world,” she says. The goal was to be the start, not the end, of a truly global conversation.

In their statement, Baylis and her colleagues recognized that national governments will continue to decide what genetic technologies are legal, and that countries will vary widely in the approaches that they take. At the same time, there is a clear need for what the statement called a “broad societal consensus” on what uses of the new technology are acceptable. For Baylis, the interesting part will be determining what that consensus looks like.

“Consensus doesn’t mean that every single person on the planet agrees, but it does mean that in coming up with the decision, everybody had a chance to speak to the issue,” she says. For Baylis, this raises the issues of both science literacy and ethics literacy. “The majority of people are not scientists, so what we need to do is find ways to empower them to understand the issues and form their own considered opinions. There’s no reason why the general public can’t be a part of the conversation. This is an important goal especially as the outcome of that conversation has widespread implications for everyone — ourselves, our families, our progeny and our future.”