Currently, people conceived through sperm donor insemination have no official, regulated repository to turn to for information about their fathers or half-siblings. Instead, many find the answers they're looking for with the help of the privately run, Colorado-based Donor Sibling Registry.
That's the path Patricia Gervaize recommends to parents when their donor-conceived kids start asking questions, often in early adolescence.
"I think they need to teach their kids that the registry exists," said Gervaize, a psychologist at the Ottawa Fertility Clinic.
Families can join the online registry using a unique sperm donor code, then find registered donors and half-siblings who share their code. The registry is completely voluntary, so they don't always find matches.
Canadian registry overdue
But Gervaize also thinks a government-regulated registry — based in Canada — is overdue.
"People would then know where to go, because right now, parents are pretty much left up to their own resources to find out what's available to them, and the Donor Sibling Registry is based in the United States, so parents have to go there."
Wendy Kramer's son Ryan was conceived with donated sperm in Colorado in 1990. By the time he was 10 he was asking questions, but Kramer said there was nowhere to turn for answers.
"He was asking, 'What if I have half-brothers and sisters out there, and they want to know me and I want to know them? There's no way for us to find each other,'" said Kramer. "So we made a Yahoo group, thinking maybe he's not the only curious kid."
She was right. Kramer and her son started the Donor Sibling Registry, first as an online chat group, then as a website.
Website has helped connect 13K siblings, donors
Now the online resource boasts more than 51,000 members and claims to have helped unite more than 13,000 half-siblings and donors.
Kramer said the website has become an essential resource for children conceived through sperm donation around the world. The site is managed and operated with the help of membership fees.
"For Canadians, I think it's really important to be on the Donor Sibling Registry, as that's the one point of contact," Kramer said. "U.S. sperm banks ... claim on their websites that they ship to 40, 50, 60 countries around the world."
Kramer said she's tried to get government agencies to pay attention.
"We've gone everywhere and asked for help. We've gone to senators, legislators, the National Institutes of Health. We've gone to the Surgeon General, U.S. Federal Drug Administration, everywhere. And nobody wants to help."
Here in Canada, there are similar calls for government-regulated tracking of sperm donors and recipients, especially for health reasons.
Medical histories incomplete
Vanessa Gruben, a law professor at the University of Ottawa and a member of the university's Centre for Health Law, Policy and Ethics, said without a central repository for that vital information, many Canadians have only half a picture of their medical histories.
"It's the first thing your family doctor asks when you go for your appointment: 'Do you have a history of this?'" Gruben said.
'It's the first thing your family doctor asks when you go for your appointment: 'Do you have a history of this?''
- Vaness Bruben, University of Ottawa
"The other important piece of a registry is providing donor-conceived people with information that will ensure that they don't engage in an intimate relationship with somebody who is genetically related to them."
Gruben said private, sensitive information should be collected and stored by a government "that is going to be responsible for the security and for disclosing the information to the appropriate people at appropriate times."
Now that Ontario is increasing public funding for fertility treatment, Gruben said the next step is to create a registry.
Wendy Kramer said her experience with sperm banks has taught her an important lesson: families can't rely solely on the industry to help them make connections when the time comes.
"When we stepped into this world, we thought this was the medical community. We all assumed there was accurate record keeping, that there was some sort of oversight, there was regulation, someone was watching. That's not so. These sperm banks, they're sperm sellers, that's it. They're in it to make money."