Screen capture from The World’s Biggest Family

Port Hope woman discovers sperm donor lied about his health and history

Article by Bill Hornbostel

Some years ago, director Barry Stevens had discovered the identity of the man whose sperm was used to conceive him. Then he found out that he has about six hundred half-siblings, all from sperm donated by the same man. Thanks to cheap DNA testing from companies like 23andMe, some of those half-siblings began to show up in his life. Many of them were unaware of how they were conceived; they express shock, distress, but also excitement on learning that they have a new, huge family. Stevens, inspired by meeting them, began a journey into the world of anonymous sperm donation and created a documentary about it, The World’s Biggest Family.

In his documentary, Stevens also delves into issues around anonymous sperm donation: doctors who used their own sperm and lied about it; donors with heritable physical or mental health problems; donors who discover that their sperm was used to father hundreds of children, despite being told by sperm banks that there were strict numerical limits.

One of Stevens’ interviewees is Port Hope resident Angie (last name withheld), who with her partner decided to use an anonymous donor to conceive. Angie and her partner were assured that the sperm donor had passed through a rigorous screening and testing process. The truth that she uncovered was that the sperm donor lied about his health and life history.

Angie’s trek to uncover the truth started when she began to connect with other mothers who had used the sperm from the same donor through both the Donor Sibling Registry and through the sperm donor clinic’s own version of the registry.  Angie recalls, “All of a sudden one of the moms said, ‘Hey, I got a message from the donor, and this is the picture. Do you guys think that’s him?’ And so, a bunch of us had joined, probably over the course of a week after hearing that our donor had joined.”

“All of the messages that were posted onto the message board, you would receive like an email notification that a message was posted,” Angie continues. “In that email notification, all of the emails of everybody registered under that donor number, the emails were exposed.”

“One of the moms started connecting names with email addresses because a lot of people have their last name and their email address, just started doing some googling,” adds Angie. “And then she found our donor, once she connected his email address, which was his last name, and the first name listed on the message board. The first thing that came up was him saying, ‘I have schizophrenia,’ a YouTube video that he was responding to with his experience with having schizophrenia.”

From there, things snowballed after that mother broke the news to the group. “Then everybody started searching and super-sleuthing and someone did a criminal records check. And somebody that lives closer to the sperm bank started calling around the universities to see if this donor had all the degrees that he said he had, he didn’t even have a single degree at that time.”

Angie talks about how she felt on learning the background of the donor. “There’s that moment of no return, there’s nothing you can do, and you’ve got that lump sitting pretty heavy in your stomach, and you’re helpless.”

“We felt pretty sick, pretty helpless. And then you go through almost like stages of grief, and you feel angry at some point, and you feel lots of frustration, you feel violated, you feel that somebody wasn’t honest with you about one of the most important things in life – another life – and their dishonesty has compromised the health and safety of your child.”

“With this level of deception,” says Angie, “We had a strong sense that any efforts that we made to try to ask the company to sort of admit and take responsibility and make changes, we had a good sense that we would be laughed at and told that we were out of our minds that none of it was true.”

“We said nothing to anybody other than our group,” continues Angie. “And everybody started to go on to that website, screenshot everything possible so that when we did seek a lawyer’s help, and then (when) the lawyer has to let them know what’s going on, we had a good sense that they would start changing everything and taking things down, including the donors.”

Angie talks about the search for a lawyer willing to take their case on. “When most people have spent their life savings on trying to create a family, nobody really had a whole bunch of incomes. We needed to find lawyers that would work on a contingency, and also deal with this particular scenario, which is not a guaranteed source of income for you. There’s no sure win in this because no one has tried cases like this.”

It took several months to locate a lawyer, assemble over a thousand pages of documentation, and present their findings to the company. “The company’s response was, we’ve got the wrong guy,” Angie states. “And then they continued to sell and actively find people to sell the additional units that were created when they called him out of retirement to donate more.”

It took about three years to reach a settlement with the donor clinic, after trying to sue the clinic in Georgia (where the company is based). “I would love to have seen how things will play out in the court,” says Angie.

“Unfortunately, we don’t have wrongful conception [laws]. The probably very privileged white guys from back in the day that were creating these laws didn’t foresee any of this,” Angie adds. “We haven’t had any laws created to protect the recipients of gametes or the young people that are created by that.”

“I don’t really think anybody goes into this thinking that what we experienced is possible,” Angie says. “People think this industry does all this testing. The word medical gets thrown around all the time and there’s nothing medical about any of it.”

“You’d better be better off actually going to a blood donor clinic and meeting a nice altruistic gentleman who’s just donated blood sitting across the table from you while you’re eating your cookies and drinking your juice after you’ve donated,” Angie adds. “All the same testing, the same questionnaire that you receive to donate blood is the same that the donors get to donate genetic material to create a human with. And they can lie on it if they want because nobody checked it.”

“Otherwise, I would always suggest maybe finding somebody you know, because the current state of the whole industry is buyer beware,” she says. “There are probably lots of great donors out there, but it’s only if a great donor passes the threshold of that businesses doorway and signs up. Because there’s nothing that happens past that threshold that would ensure that the quality of the donors are what most people would choose for themselves.”

Angie talks about reforming the sperm donation system. “To reform the system, you’d need to actually have people that know what’s happening in these clinics making some decisions,” she says. “Even in high levels like Health Canada, they have blinders on, and I think that we all assume that when somebody says there’s a medical exam being done, that it’s like medical exam that you and I have when we go to the doctor.”

“The actual medical exams that are really happening at these clinics are nothing like that. It’s a matter of having people that really know what’s going on making recommendations, but that those actually get listened to,” Angie continues. “If the FDA [Food and Drug Administration] doesn’t make any changes, but Health Canada does, but we import all of our stuff from the States, it doesn’t really help at all.”

“I think they have to look at donor suitability a lot more seriously, they need to make sure that criminal record checks are being done,” Angie says. “I believe that medical records need to be looked at. Right now, what they call a medical record are the files that the sperm bank themselves create. Their medical record is a file folder of a bunch of lab results. And the lab results are only testing for sexually transmitted infection exposure and a few genetic things.”

She also notes that the anonymity of the system has other problems. “Even if they had a centralized system for all donors to be recorded because a lot of donors will donate a variety of different clinics, that makes it really hard to track. Nobody’s tracking birth. What you’ll see in the documentary is a family with extremely high numbers of children, and with the whole anonymity, and people not being honest with donor-conceived people… they go on and meet other siblings and could end up having families together.”

“I’ve offered Health Canada to sit down with people, but I get ignored,” Angie says. “I would help them handwrite the new [law]. In 2016, they did start a process for rewriting the Assisted Reproduction Act for Canada, but it’s a piece of garbage still. There weren’t a lot of changes in really important areas, the focus for them was for folks that are storing their own.”

Angie also talks about her young son. “Right now, he’s healthy, and he’s been healthy since day one. Hopefully, that will continue for him,” she says.

Because cannabis use can trigger schizophrenia, which can be inherited, Angie is concerned about her son’s exposure to it. “The pressures are high for kids,” she says. “Because it is prevalent and accepted by the government, it’s harder to have a good argument with your child.”

“I’ve been approaching it just with understanding genetics, understanding addiction, and hopefully that’s enough to help make healthy decisions as they come up for him as a young teen,” Angie says.

Angie has worked to keep this struggle from having a toll on her own mental wellbeing. “I’ve tried to keep a healthy balance of my own outside interests and staying active and keeping engaged with my own work and my family as best I could.”

“Even just understanding what potential my son has, from a parenting perspective, you do a lot more research so that you can understand mental health as a whole, a lot better, help normalize mental health and mental health issues, because so many people deal with mental health issues at any point in their life. They’re not something to be hidden, tabooed, they should be just treated the same as your oral health.”

Angie states that she wants her experience to help others. “I believe in the message and trying to educate people that aren’t being told the truth about how this industry does its business,” she says.

“I can’t let it scare me like a little mouse into a tiny hole where I’m going to hide for the rest of my life and keep information that could allow other people to be more educated when they’re making a decision for themselves, with how they’re going to create their families.”

The World’s Biggest Family will premier on CBC on October 1 at 8 pm.

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