Why Canada isn't ready to talk about ‘3-parent’ babies
Stiff penalties, 'designer baby' fears may be silencing debate about Mitochondrial Replacement Therapy
A British parliamentary decision to approve a controversial fertility procedure that would produce so-called “three-parent babies” has captured the imagination of people who believe it could save lives.
But experts say that a fear about “designer babies” and the strict laws that govern reproductive technology in Canada have had a chilling effect on any discussion here about the procedure.
"I think part of the problem is that potential punishments are so severe that it scares people off," says Sara Cohen, a Toronto fertility lawyer.
"There’s no conversation about this, there’s none," Cohen said. "We’re talking about a really significant topic medically. I think at the very least we should be having a conversation about it."
On Feb. 3, the U.K. parliament voted in favour of allowing clinical trials for Mitochondrial Replacement Therapy (MRT), which would prevent mothers who carry a specific type of Mitochondrial disease from passing it on to their newborns.
Dr. Mark Tarnopolsky, a medical professor at McMaster University in Hamilton and an expert on the disease, says the decision gives hope to mothers who carry it.
"These women have a potentially fatal disease," Tarnopolsky says. "They essentially have a Sword of Damocles hanging over their head with this disorder, where if they have a fairly high burden of the disorder, they are likely to pass it on to every subsequent offspring."
The two MRT procedures
Mitochondrial disease refers to a group of disorders affecting the mitochondria, which are tiny structures located within almost all cells of the body. The mitochondria act as the powerhouse of the cell by converting food and oxygen into energy.
According to MitoCanada, an organization that supports Canadians who suffer from the disease, 1 in 5,000 people have some form of it.
Treatment for the disease is limited and no known cure exists. Most children who have the disease do not live longer than their mid-teens.
The cause of the disease is a genetic mutation in the mitochondria itself. The mutation causes the mitochondria to stop producing energy, and when mitochondria cannot produce energy, cells fail and in turn the body’s organs can fail, causing death.
Since 2008, scientists in the U.K. have researched two procedures to prevent this mutation from being passed on to newborns.
One procedure involves removing the nucleus from an embryo containing the mutated mitochondria and transferring it to a donor embryo containing healthy mitochondria. The embryo is then implanted in the mother's uterus.
The other procedure is similar but involves transferring the nucleus from the mother’s unfertilized egg to a donor’s egg containing healthy mitochondria. The embryo is then fertilized and implanted in the mother's uterus.
Babies born from this procedure inherit 99.9 per cent of their DNA from the parents, with the other 0.1 per cent coming from the donor, according to a report from the U.K.-based think tank Wellcome Trust.
At present, MRT remains illegal in Canada, under the Assisted Human Reproduction Act.
Passed in 2004, the legislation states no person can knowingly "alter the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants."
It also states that any person found guilty of breaking the law can face fines of up to $500,000, or a jail sentence of up to 10 years, or both.
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"Let’s see what the results show in the next five to 10 years," Mahutte said. "At some point, people might be confident enough to say, 'Well, maybe we should start doing that in other countries.'"
Mahutte does believe that most fertility clinics in Canada would want the government to review the legislation as a whole. He says research in the field has evolved rapidly since 2004 and some other aspects of the legislation may also need updating.
Mahutte also says that some difficulty exists in communicating this to Health Canada, the ministry responsible for administering the legislation. This is partly because the ministry has been slow to reorganize ever since being given responsibility for the legislation in 2012.
"It’s still very difficult to put forth any questions when they come up," Mahutte said.
The ‘designer baby’ fears
A specific ethical concern may also explain why the topic receives little discussion.
According to Health Canada’s website, altering the genetic code of an embryo was made illegal to prevent so-called "designer babies." This term refers to babies created to have "specific genetic traits that the intended parent(s) consider to be desirable."
"I think the reality of what they’re doing in the U.K. is so far removed from that," Mahutte says. "The mitochondrial DNA do not code for any traits at all."
Cohen feels that government tried to calm public fears that science would one day give parents the option of creating designer babies by outlawing any altering of the genetic code.
"We legislated before we were even there," Cohen said. "We legislated in concern of the potential of the worst possible science-fiction outcome that could exist one day."
Although provisions of the legislation may have discouraged debate on MRT, Tarnopolsky believes a dialogue about it will eventually begin in Canada.
"When a sophisticated first-world country like the U.K. deems this appropriate to move forward, I see no reason why that dialogue should not be open, and open soon, in Canada."