Dr. Handyside is not a fan of his government's approach. “It's just added a whole layer of bureaucracy. It makes parents feel like pariahs.”
Now at the London Bridge Fertility, Gynecology and Genetics Centre (whose website calls him “the father of PGD”), he recently wrote a commentary in the journal Nature, acknowledging that the new screening technologies “come with ethical and social challenges” and “are bound to increase demands from prospective parents who want to know, or control, how their child will turn out.”
But Dr. Handyside feels that most couples are not interested in cosmetics – “they just want a healthy child” – and should be able to decide for themselves what they wish to avoid. The market polices itself, he says, pointing out that condemnation from the public and his own peers prompted Dr. Steinberg to withdraw his offer to test for eye, hair and skin colour.
Yet most screening decisions are made in private, between patients, their doctors and the ethics-review boards that clinics convene. But in Britain, all PGD testing is a matter of public record, and often, controversy.
In 2007, for instance, doctors were condemned for enabling a couple to avoid having their baby inherit a severe squint that prevented the father and grandfather from looking anywhere but down or to the side. Dr. Handyside says the father had undergone several operations to ease the condition, which “had blighted his life, and he didn't want to pass it on to his children.” Even conditions that seem mild can have a serious effect, he adds.
Which is why trying to restrict embryo tests to health-related conditions provides no easy answers: Should it include those that are mild or manageable, those that only increase disease risk, or only develop later in life?
Such questions are ever more pressing, says Marcy Darnovsky of the California-based Center for Genetics and Society: “Many people live happy, fulfilling lives with the conditions we're trying to weed out.”
Seang Lin Tan, a renowned fertility specialist at McGill University who worked with Britain's IVF pioneers, agrees that the technology comes with tricky ethical issues. To him, the most vexing is whether embryos should be discarded for carrying disease genes that may not have an effect until well into adulthood.
Dr. Tan, also medical director of the Montreal Reproductive Centre, dismisses as “a lot of hype” the fear that couples will use PGD to make blond, blue-eyed babies. But he sympathizes with those who fear that the future may bring, say, breast cancer: “If you have this disease in your family ... and you're doing PGD anyway, I think it's reasonable.”
Last January, Dr. Tan says, his Montreal clinic became the first in Canada to begin shipping cells to Reprogenetics, a New Jersey laboratory established by Dr. Munné, the PGD pioneer, that runs non-stop – even on Christmas Day.
Quebec is the only province to fund IVF (providing only a single embryo is implanted to avoid the costs and risks linked to multiple births), now subsidizes a basic form of PGD.
Technology now available in Canada scans only a small fraction of chromosomes, Dr. Tan says, and a recent study in the New England Journal of Medicine found that the older tools can actually hurt pregnancy rates. Which is why his patients are willing to pay a premium of roughly $5,000.
The Reprogenetics chip can scrutinize abnormalities in all 23 pairs of chromosomes simultaneously, and demand is so steady that Dr. Munné, who serves at least 10 Canadian clinics, says he may open a branch north of the border.
Dr. Tan's wife, Grace, who is director of McGill's medical MBA program and often helps out at the clinic, says patients who opt for PGD often are older and “very stressed – they have had repeated miscarriages and repeated abortions. To know they received a normal embryo gives them hope.”
One woman was determined to avoid the genetic mutation that causes webbed feet in her husband's family. But all 10 of the embryos the couple conceived by IVF carried the mutation.