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The Norman Barwin story is creepy, to say the least. The former Ottawa fertility doctor recently had his licence revoked by the College of Physicians and Surgeons of Ontario, after decades of deceiving and outright lying to his patients about the paternity of their offspring.

Heterosexual couples who meant to conceive together found out that strangers’ sperm had been used to create their babies. Cancer patients who stored sperm at his clinic in case of chemotherapy-induced infertility learned that their sperm might have been used without their permission.

And, in at least 16 cases, Mr. Barwin secretly used his own genetic material to impregnate his patients and create human beings. Eleven of them are part of a class-action suit against him. At his disciplinary hearing in late June, 29-year-old Rebecca Dixon spoke about the impact of learning that she was genetically related to him, not to the man she knows as her father.

“It made me feel as though my existence was something to be ashamed of,” she said. Mr. Barwin, now 80, didn’t show up to hear her.

Although Mr. Barwin’s case is extreme, it’s only one example of how desperately Canada’s assisted-reproduction industry needs to be regulated, and those regulations enforced. Complaints against him surfaced in 1994, but it wasn’t until 2013 that the College first suspended his licence for two months, for so-called sperm sample mix-ups.

The half-siblings suing him were able to prove their parentage, and to find each other, thanks to widespread, affordable DNA testing. They’re not the only donor-conceived offspring, as some call themselves, being mobilized by such tests. Half-siblings around the world have discovered at least one thing in common beyond some genes: an unhappiness that their right to know where they came from was an afterthought in their own conception.

Last year, a number of offspring formed the Donor Conceived Alliance of Canada (DCAC) in response to public Health Canada consultations about updates to the 2004 Assisted Human Reproduction Act.

Founding member Kevin Martin testified in front of the committee, but said the original list of stakeholders for the hearings didn’t include donor-conceived offspring at all. And when the government passed three new regulations to the act late last month, all of them concerned parents, surrogates and egg or sperm donors, not the children.

Those changes were necessary, as many of the current rules, especially around payment, are confusing or unenforced. But Mr. Martin is unhappy that so far, the government seems impervious to DCAC’s desire for easy access to information about genetic heritage. The group wants Canada to list the details of donor conception on birth certificates and to end its policy of destroying donation records a decade after conception.

Over all, it wants to ban donor anonymity altogether. That became law in the Australian state of Victoria in 2017, after a cancer patient argued that she wanted to inform relatives of their genetic risk – and that she had the right to meet her biological father before she died.

DCAC also wants a limit on the number of conceptions allowed from a single donor, which isn’t the case here or in the United States. One Canadian donor has learned that he may have fathered as many as 100 children after years of donating at multiple clinics. In total, he said that the $75 he received each time to cover his expenses added up to as much as $25,000.

And American photographer Eli Baden-Lasar just published a series of portraits of his 32 half-siblings. While he always knew how he and his sister were conceived, the sheer number of relations he’s found made him feel “mass-produced.”

“I had this suspicious feeling that scientists were conducting an experiment, had taken a lunch break and then forgotten to check back,” he wrote about his origins.

Mr. Baden-Lasar has lesbian mothers, and LGBTQ people’s uncertain access to reproductive assistance is one of many reasons that the ethics of genetic heritage can be a touchy subject. France only legalized in vitro fertilization for single women and lesbians last month.

But although there’s more equitable access here, things aren’t well enough to leave alone. Lesbian families were among those deceived by Mr. Barwin, who was actually awarded the Order of Canada for his work with same-sex couples. That’s also been revoked.

Last year, the online community We Are Donor Conceived surveyed members in 15 countries, and found that 59 per cent worried that the parents who raised them would be hurt by their search for information. Even so, 96 per cent felt that the choice to know the identity of their donor was a right.

In the end, assisted reproduction exists entirely to create new people. It seems important to respect that many of those people want things to be done differently.

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Editor’s note: An earlier version of this column stated that We Are Donor Conceived was based in Britain. In fact, it is an online community run out of the United States, with members around the world.

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