Sperm bank misled families about donor’s genetic disorder, $30M lawsuit claims

The families said the clinic in Newmarket, a town north of Toronto, told them donors go through extensive screening and genetic testing. 

However, the claimants allege Donor 3116 is actually a lab tech, without any advanced degrees, who has a genetic disorder that is evident in photographs and which could have been confirmed by testing.

The families say they would not have chosen the donor had they known the truth about his background and health.

CBC News has asked Outreach for comment and has yet to receive a response. The allegations have yet to be proven in court. 

We’re blessed to have him in our lives, I just wish that he wasn’t afflicted with this disease.– Louise Frame, mother of child from Donor 3116

“The donor was held out to be a healthy, well-educated individual who had gone through extensive screening and testing and was healthy by all accounts. And so these families have each conceived a child from this donor and subsequently found out that the donor suffers from Charcot Marie Tooth disease,” said James Fireman, partner at the law firm Samfiru Tumarkin LLP.

The Canadian firm is representing the families alongside San Francisco-based Hersh & Hersh.

Charcot Marie Tooth disease (CMT1) is a group of degenerative nerve disorders which primarily affect the arms and legs. As the disease progresses, it can become so severe that some lose the ability to walk. It often is diagnosed in adolescents but can show up as late as mid-adulthood.

The seven families all conceived a child from Donor 3116. Five of their children have now tested positive for CMT1. 

“For the parents that have children that have this disease or that might have this disease, they are constantly waiting to see if it’s going to show up … any time something happens, they’re thinking, is this the first symptom? Is this the first time? And it is something that, you know, really gets underneath every interaction that they have with their children,” Fireman said.

‘Absolutely devastated’

Louise Frame and Kristy Kokoski, one of the families taking legal action, say it was heartbreaking to learn their two-year-old son has CMT1. 

“We were absolutely devastated, we just both broke down crying,” Frame said. “We’re blessed to have him in our lives, I just wish that he wasn’t afflicted with this disease.”

Frame said both herself and Kokoski were inseminated with the donor’s sperm, and Frame got pregnant twice — but lost both pregnancies.

“My fertility director suggested that sometimes miscarriages are caused by chromosomal abnormalities … so I’m not sure if that was the reason, but it’s definitely a possibility, so it was very distressing to learn about that afterward,” Frame said. 

Kokoski said after learning about the donor’s condition, she was depressed and began to fixate on her son’s health — noticing every time he trips while playing, and wondering if it’s normal childhood clumsiness or a symptom of CMT1. 

“He walked late and I guess I just worried he wasn’t going to walk?” she said. 

The families also allege that after Outreach was alerted to the donor’s genetic condition and false background, it continued to sell and promote his sperm. 

Each family is seeking roughly $4 million in damages, for a total of more than $30 million.

Frame said it’s possible more families than the seven involved in the lawsuits were affected.

“The way fertility is regulated in Canada makes this incredibly concerning for Canadians,” said Fireman. “There is a very limited supply of sperm donors that Canadians have access to … so when one of, if not the biggest, supplier of semen in Canada has these issues, it’s very, very concerning.”

Failed health inspection

In Canada, it’s illegal to compensate sperm donors, making many banks reliant on importing sperm from countries where donors are paid for assisted reproduction. 

A separate set of lawsuits filed against Outreach in 2016 alleged a different donor’s criminal history and schizophrenia were not disclosed. One of those lawsuits, against Outreach’s U.S. parent company, will be heard by Georgia’s Supreme Court. 

Outreach has also previously failed annual safety inspections with Health Canada, most recently in 2016, for not correctly processing semen that was imported or not keeping records for each container of semen. 

Simon Phillips, a clinical embryologist and vice president of the Canadian Fertility and Andrology Society, said the assisted reproductive process can be a complex and expensive one — not to mention the emotional impact it can have on families. 

“Most donor sperm that is used in Canada comes from importers from U.S. banks, although there are a few very small Canadian sperm banks. This is because of Canadian law concerning payment to donors: both egg and sperm,” Phillips said. 

Sperm usually costs between $800 and $1,200, he said, and a new sample is required each month if used for intrauterine insemination. Families also have to meet with a psychologist prior to starting treatment to discuss how the process might impact them.