CBC Docs POV·Article

When it comes to sperm donor anonymity, Canada is behind the curve

Canadian families and donor-conceived children are kept in the dark about their origins

Canadian families and donor-conceived children are kept in the dark about their origins

Close of man hands holding sterile sample container bottle for medical analysis. Health care and medical concept (Getty Images/iStockphoto)

In the years since Barry Stevens was conceived, much has changed in the world of sperm donation. Back then, in the 1950s, it was a murky affair. As we discover in The World's Biggest Family, a documentary from CBC Docs POV, a woman would show up at her doctor's office and a fresh semen sample would appear from a back room, provided by a man she knew nothing about. Typically, she was told to go home, have sex with her husband and pretend the child was his. Couples were instructed to keep the matter secret. Stevens's parents followed that same advice — his mother didn't tell him he was donor-conceived until after his father's death.

World's Biggest Family: Anonymity is Wrong

1 year ago
Duration 0:44
For nearly all of Barry's half-siblings, the anonymity of perm donors is wrong. They feel that every person has the right to know their origins and therefore, who they are. 0:44

In contrast, sperm donation these days happens on an industrial scale. Men are enlisted for a couple of deposits a week, on contract. Their samples are split into multiple portions and sold for about $1,000 each. The men are numbered and catalogued. They provide baby photographs of themselves, voice recordings and catchy philosophical meditations.

But one thing hasn't changed: in many of the world's jurisdictions, sperm donors continue to be anonymous.

Sperm donors kept a secret in Canada

That is the case in Canada. Men who donate sperm have the right not to be identified to the parents who used the sample — or even to the individuals created with it. Unlike adoptees in most provinces, people conceived through donated sperm have no right to ever know their origins. In fact, their parents are often made to sign contracts promising they'll never even try.

Anonymity in Canada's Assisted Human Reproduction Act

2004 
Originally, there was a clause in the law stating that "...the identity of the donor — or information that can reasonably be expected to be used in the identification of the donor — shall not be disclosed without the donor's written consent." Donors had the right to anonymity and donor offspring had no right to information about their donor's identity.

Interestingly, in the original law, two people who were in a sexual relationship, but worried they might be related through a donor, were allowed to write to Health Canada and be informed of their relationship. (This was in the days before widespread genetic testing.) In reality, this was not possible, because Health Canada never collected the information needed to provide this.

2012
Both clauses (among many others) were repealed in 2012. Canada's law is now silent on the issue of anonymity, although it continues to tacitly protect it.

"We can't change what happened in the past," says Barbara, one of about 45 half-siblings Stevens has discovered so far. "But now, there is no excuse whatsoever for donors to insist on secrecy."

David, a half-brother, agrees. "Everyone has the right not to be deliberately deceived or deliberately deprived of information about essential aspects of their personal history," he says.

In the early 2000s, Canada was on track to be a trailblazer against anonymity. In a review of an early draft of our law, the Standing Committee on Health recommended an open donation system, citing the right of a child to know its origin. "We feel that, where there is a conflict between the privacy rights of a donor and the rights of a resulting child to know its heritage, the rights of the child should prevail," they wrote. "We want to end the current system of anonymous donation."

But lawmaking is a fickle business. By the time it came to a vote, a new clause protecting anonymity had been inserted, and the onus was on those opposed to get an amendment. The amendment was defeated by one vote. So when the Assisted Human Reproduction Act finally came into force in March 2004, anonymity was enshrined as a right of the donor.

The Act had also initially called for a central health registry. But it was never set up, and eight years after being mandated, the idea was repealed.

Other countries around the world share information with donor-conceived children

In the same period, the U.K. went in a much different direction. It ruled that, thereafter, every person conceived using donated gametes in that country would have the right to find out the identity of their donor. At 16, offspring can learn the country and year of their donor's birth; information about physical features, like eye, hair and skin colour; and personal family and medical history. At 18, they can learn the donor's full name, date and place of birth, and most recent address. No more than 10 families can use the sperm from one donor — and it's all tracked.

The U.K. is not alone in opposing anonymity: Germany, Sweden, Norway, Australia and New Zealand, among others, ban it as well. But the world seems divided on the question. Canada, along with the U.S., Russia, Denmark and many others, still allow anonymity to prevail. Some jurisdictions — including China, Spain and Israel — actually require it.

These days, of course, anonymity is merely theoretical. Cheap, widely-available home genetic testing has made it virtually impossible to stay hidden forever. Yet sperm banks still promise anonymity to donors and peddle it to would-be parents.

Uncovering problems in the fertility industry

Genetic testing has made it possible for families like Stevens's to find each other. But it has also uncovered some uncomfortable truths about the fertility industry.

For starters: the size of sibling groups. Many donors were told they would sire no more than 10 children through the process. But sibling groups of 50 or even 200 have turned up. Stevens reckons his donor family could number 600.

Then there is the fact that information about the donor depends largely on a questionnaire and the honour system. A couple in Port Hope, Ont., thought they'd selected a healthy donor working on his PhD, but when the sperm bank accidentally disclosed his full name, they discovered he had no degrees at all, had been diagnosed with schizophrenia and had a criminal record.

Other cases over the years have underscored that medical screening may be inadequate. One donor passed on a deadly heart condition to nine of the 24 children conceived with his sperm; another seems to have given rise to autism in at least a dozen of his offspring. And because of anonymity, it's difficult to get the word out to all the children, should that need arise — as a donor with a heritable but treatable cancer discovered.

But for many donor offspring, even when the news is upsetting, knowing is better than not knowing. This is true even for people — and there are now quite a few — who discover their biological father was actually their mother's fertility doctor.

Stevens and others believe it's time to end donor anonymity. In The World's Biggest Family, he asks his brother David why the genetic connection matters so much, even though they both loved the dads who raised them. "I haven't the faintest idea," replies David. "But it does."

Watch The World's Biggest Family on CBC Docs POV.

Alison Motluk is a Toronto writer who publishes HeyReprotech, a weekly newsletter on assisted reproduction.

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