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MAKING BABIES

In the age of in vitro fertilization does the state have a place in the test tubes of the nation?

John Geddes December 6 1999
Cover

MAKING BABIES

In the age of in vitro fertilization does the state have a place in the test tubes of the nation?

John Geddes December 6 1999

MAKING BABIES

Cover

In the age of in vitro fertilization does the state have a place in the test tubes of the nation?

John Geddes

For infertile couples desperate to have children, it was the sort of breakthrough that can make scientists seem like angels of mercy. McGill University researchers working at Montreal’s Royal Victoria Hospital announced on Nov. 17 that they had succeeded with what promises to be a revolutionary innovation in test-tube baby-making. Their new method could eliminate the need to subject would-be mothers preparing for in vitro fertilization to nearly two weeks of daily injections of powerful fertility drugs—hormone shots that are expensive, unpleasant and cause painful side-effects in a small minority of women. On hand for the McGill research team’s triumphant news conference were an ecstatic Saudi Arabian couple and their healthy daughter, born on Sept. 23 thanks to the new technique. “My wish came true,” said the new mom, Jihan Al Kharouf, 35, an obstetrician educated at McGill. “I had been trying for five years.”

The McGill researchers’ big day had all the elements that make the exploding field of reproductive technology so exhilarating—but also so troubling. What could be wrong

with helping a childless couple get the baby they so badly want in the least risky way possible? When it comes to hightech treatment of infertility, though, the debate can never be so tidily framed. The research that led to the McGill breakthrough was conducted on embryos created for that purpose—a practice the federal government sought to ban as unethical just two years ago. Other profound issues swirl around the long-term implications of the McGill research, consequences that could go far beyond merely simplifying in vitro fertilization and avoiding nasty side-effects. One possibility: young women in the future might have the option of getting their eggs removed and frozen, ready to thaw out and fertilize in a laboratory when they are much older.

No wonder Health Minister Allan Rock wants to get control of both research into human reproduction and the ways private fertility clinics and public hospitals make use of the results. Rock plans to introduce a sweeping new law early in 2000. Shirley Pratten of Nanaimo, B.C., a grassroots activist on fertility issues whose own teenage daughter was conceived

So far, researchers are outpacing the politicians, but scientists still fear a ‘research chill’ on their efforts to explore the frontiers of fertility

thanks to donated sperm, is among those who believes legislation is long overdue. She sums up the challenge facing Rock in a question: “How do we balance the need to help people with infertility against not violating our social and ethical values?” Whatever the answer, Pratten contends, it will not be found by “just looking down a medical and scientific microscope.”

But doctors and scientists worry that they are being portrayed as villains in this debate—and not for the first time. When the Liberal government introduced a similar bill in 1996, its aim was to ban 14 practices—from the creation of embryos for research to the sale of human sperm and eggs. The medical community angrily opposed the law, and it was allowed to die before the following years election. Fertility doctors are deeply skeptical that Ottawa will get it right this time. “The problem we have in this area,” complains Dr. Seang Lin Tan, director of the McGill University Reproductive Centre,

“is that some people have the concern that we do all sorts of Frankenstein experiments.”

Apprehension about the pending legislation is not limited to men in white lab coats. Sherry Levitan, a Toronto lawyer who works with paid surrogate mothers and women who sell their eggs for use in in vitro fertilization, predicts that if Rock goes ahead with his plan to ban such commercial arrangements, Canadians will be forced to travel to the United States—or driven to create a dangerous new domestic black market. “People who can afford it will just go to the U.S.,” Levitan warns. “People who can’t will be driven underground, where they won’t have proper counselling or proper legal representation.”

Few commentators have as much credibility on issues of technology and fertility as the first generation of test-tube moms. Noni Cherry, a registered nurse from Newmarket, Ont., who gave birth to the first test-tube twins conceived in Canada, Ian and Sean, back on May 17, 1984, is worried the politicians are about to “put doctors in a box.” Cherry, an optimist with an easy laugh who has followed new developments with interest, favours broad federal guidelines—but predicts that whatever course Ottawa takes, “the law will always be 10 steps behind the science.” Her son Sean, displaying a 15-year-old’s knack for cool understatement, puts it this way: “You’ve got to think about people who can’t have children. But it can’t go too far. It’s kind of a difficult issue really.” Kind of. Yet those ethical entanglements seem remote from the Cherry family’s happy experience. Noni got pregnant on her first try at in vitro. When the doctors first saw the two black dots that would grow into Ian and Sean on the ultrasound, they dubbed them the “Cherry pits.” Although she tried later, unsuccessfully, to have more children through IVF, Noni Cherry’s gratitude for what technology did for her is

undiluted. Similarly, there was no hint of misgivings in the tableau of smiling parents, swaddled baby and confident scientists at the recent McGill news conference. Still, the twist on IVF announced that day illustrates many of the issues that underlie the looming battle over Rock’s legislation.

Ever since the first test-tube baby was born in Britain in 1978, doctors have relied on hormone injections to stimulate the production of mature eggs in women getting ready for IVF. Several mature eggs produced as a result of the drugs are then removed and fertilized by sperm in a lab. The embryos are put back into the uterus after a few days. The McGill scientists took a different tack. Instead of relying on drugs to stimulate the production of eggs ready to be fertilized, the researchers removed immature ones, then matured them in a laboratory for one or two days—a technique they call in vitro maturation. After that, the course of regular IVF is followed.

For women prone to side-effects, which can include painful abdominal swelling, from hormone shots, the McGill method holds obvious appeal. But Tan says the process has much broader implications. One possible outcome: if the McGill technique eliminates the need for unpleasant fertility drug injections, it could make it much easier to find women willing to donate eggs—potentially a major accomplishment. While there is plenty of donated sperm, a chronic shortage of egg donors in Canada has led to long waiting lists

for donor eggs at many fertility clinics. Some women who are unable to produce healthy eggs resort to advertising in university newspapers for cash-strapped students willing to sell theirs. Making egg donation less daunting could mean that IVF, which is offered at 23 clinics from Halifax to Vancouver and is already responsible for thousands of pregnancies a year, could become much more commonplace.

The long-term consequences of in vitro maturation on family planning could be even bigger. Unlike sperm, mature human eggs cannot be successfully frozen, stored and thawed when needed. But Tan says deep-freeze storage of immature eggs is more technically feasible. So in the future, a 20-year-old woman might have the option of freezing many immature eggs, which could then be matured and fertilized in a laboratory much later—say, at age 40 or older, when she is likely to be producing lower-quality eggs that can make it harder to get pregnant and increase the likelihood of birth defects.

The prospect of extending a womans child-bearing years was already the subject of worldwide debate in September, when research by a British biologist, Roger Gosden, led to a startling new development: fertility can be restored in at least some women undergoing premature menopause. The breakthrough involves freezing some ovarian tissue from women suffering illnesses that threaten fertility, to be reimplanted later. The technique has worked once, for a 29-year-old belly dancer, Margaret Lloyd-Hart from Tucson, Ariz., who had lost both ovaries. (Soon after that surgical first was announced, Gosden moved to Canada to join Tans group at McGill.)

Should science be allowed to radically change the way babies are made without government oversight? Ottawa has been struggling to catch up with the racing technology of fertility for a decade. So far, the researchers and physicians are far outpacing the bureaucrats and politicians. A royal commission exhaustively studied the subject from 1989 to 1993. As a result, Ottawa tried to impose a “voluntary moratorium” in 1993 on contentious practices, such as buying and selling human sperm and eggs for IVF, and paying women to act as surrogate mothers.

The plea for voluntary restraint was widely ignored. Then in 1996, a law aimed at making the prohibitions mandatory was introduced by then-Health Minister David Dingwall. Bill C-47, as it was labelled, would also have lengthened the list to ban additional practices—such as creating human embryos for research purposes, as is done at the McGill centre and elsewhere. Government officials concede sustained uproar from the medical lobby was the main reason the bill was never passed.

Now, Rock is getting ready to try again. He declined to be interviewed for this story. But sources in and out of government say his legislation will set up a new agency, largely independent from his department, to regulate and monitor Canadian infertility clinics and research into human reproduction. His officials say a law could be tabled before Christmas, but is more likely to be unveiled early in February. Tension is building. “There is nobody in Health Canada who has any experience with these technologies,” argues Dr. Arthur Leader, an Ottawa fertility specialist and past president of the Canadian Fertility and Andrology Society. “And they are not asking for advice.”

Scientists fear a “research chill” on their efforts to explore the frontiers of fertility. Physicians in Canadas 23 fertility clinics worry that their profitable, privately run operations (only Ontario’s health-insurance plan covers IVF, and only then in limited circumstances) will be subject to draconian restrictions. But Dr. Patricia Baird, the University of

The question is, can a government draft any legislation that takes into account the subtleties of human relationships?

British Columbia professor who chaired the 1989-1993 royal commission into reproductive technology, says her fellow physicians are naturally reluctant to share power. “When you’re used to calling all the shots and being answerable to nobody,” Baird says, “of course you’re not going to like change.” Maureen McTeer, lawyer and wife of Conservative Leader Joe Clark, and author of Tough Choices: Living and Dying in the 21st Century, a new book on reproductive technology, says she encountered many scientists who feared that the more people knew about what they are doing, “the less they will be able to pioneer.” But she argues regulation is unavoidable. “The impact of this science and technology,” McTeer says, “affects our most personal decisions.”

Activists in the burgeoning infertility lobby—a tightly woven community, mainly of women, who meet in support groups, frequent Internet chat sites and diligently work the phones—strongly support much of what is expected to be in the law. They are particularly enthusiastic about Rock’s intention to set up a system for publishing the success rates of clinics offering IVF and other fertility treatments. There is also fervent support for the plan to set up a mandatory registry of anonymous sperm and egg donors. That registry will allow individuals conceived with donor sperm or eggs to find out about the medical histories of their biological parents.

Whether they will also gain the right to learn the identity of the donor is another matter. That decision will be left up to the new agency, said a senior Health Canada official. But even if the agency does require such disclosure, doubts remain about how many of the children conceived through donor IVF would ever know to check the registry. Doctors say many parents do not plan to tell their children an anonymous donor supplied half their genetic heritage. “You can’t legislate for people to tell their kids,” allows Toronto social worker Sherry Franz, who counsels infertile couples.

Rock’s law is expected to echo most of the prohibitions that were in the earlier, failed legislation. That means forbidding practices such as cloning humans and selecting children according to sex or appearance. But the law’s more immediate impact will be in the often shadowy world of chequebook reproductive arrangements. Senior Health Canada officials say it will oudaw payments, beyond modest compensation for expenses, to donors of human sperm or eggs. And the law will make it illegal to pay a woman to carry a baby for another woman. “There’s a worry about the commodification of human life,” says University of Calgary geneticist Renée Martin. “You could end up with a situation like in the U.S., where there’s bidding for the eggs of college students.”

Still, a government ban on the fertility trade ignores the reality faced by anguished, infertile Canadian couples. “The

voluntary moratorium didn’t make a dent,” Levitan, the Toronto lawyer, contends. “People said, ‘It’s my family, I can’t wait.’ ” She says surrogates she has worked with get on average $20,000 to be impregnated through IVF and carry another woman’s baby. Other sources report that Canadian women routinely get $2,000 to $4,000 for donating eggs.

Some infertility clinics now offer a woman with healthy eggs a month of free IVF service, worth about $4,000, in return for sharing her eggs with another patient. Physicians say it is a convenient way to get donors without compelling patients to find purely altruistic donors among friends or family—a difficult quest that may force infertile couples to sacrifice the privacy of their attempts to have a family. Still, Ottawa is likely to rule that offering free IVF service in return for eggs is outof-bounds. Franz says that’s a good idea. “I have spoken to women,” she reports, “who said, ‘Yes, I gave up half my eggs, and I didn’t get pregnant that cycle, and now I don’t know if my eggs got somebody else pregnant, and that really bothers me—not knowing if I have a genetic child out there.’ ”

Consider the layers in the scenario Franz describes. Two women, unknown to one another, but bound somehow by the way they have turned to science in their quests to be mothers. Can any legislation be drafted to take into account relationships so subde? What law can balance, say, the desire of a mother to keep secret the fact that her daughter was conceived with donated sperm, against the possible preference of that child, as an adult, to know her genetic heritage—perhaps including the donor’s name? On one side are those who say these questions are so troubling they cry out for regulation. On the other are those who see clashing emotions and competing values so unmanageable that government must stand clear—as out of place in the nation’s fertility clinics as Pierre Trudeau once said it was in the nation’s bedrooms. When Allan Rock finally takes action, he can expect an outpouring of reaction more deeply felt than anything he has faced before. What is at stake, after all, is who gets to have babies, and how.

With Susan McClelland and Patricia Chisholm in Toronto

Susan McClelland

Patricia Chisholm

Setting limits on the new technology

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Health Minister Allan Rock’s law on reproductive technology is still being drafted, but Maclean's has learned key details from government officials and informed outside sources.

The new agency to regulate research into human reproduction and fertility clinics will operate at arm’s length from the government, modelled after the independent British authority, instead of being set up as part of Health Canada —a proposal that had been considered.

The new law will forbid buying and selling human sperm and eggs and hiring surrogate mothers, prohibitions that were part of a law proposed in 1996.

But while that earlier bill would have outlawed creating embryos in laboratories for research, Rock’s law will give the new agency power to regulate what embryo research would be permitted.

A registry of sperm and egg donors will be set up to keep track of medical histories and genetic information. But the question of whether to require donors to let their identities be revealed, when children produced by donor sperm or eggs reach adulthood, will not be answered by the law. Instead, the decision will be left up to the new agency.

John Geddes