One thing I have learned over the years (that I definitely did not have on my bingo card) is that the business of sperm donation is in desperate need of reform and regulation. For the benefit of all parties — the kids conceived, their families, and yes, the donors as well. Cause it’s not only weird tech billionaires actively trying to spawn hundreds of progeny; there are too many unsuspecting donors who trust clinics to use their, um, offering responsibly… only to learn years down the line that they’ve fathered 97 kids. Or, a statistically unlikely situation unfolds with devastating consequences. I almost covered this story back in May, when we learned that a man in Europe made a donation to one sperm bank that resulted in at least 67 children. The devastating factor is, though healthy himself, the donor (unknowingly) had a rare mutation to the TP53 gene that is linked to the rare Li-Fraumeni syndrome that significantly increases the risk of cancer. Turns out the reporting in May was wrong: the donor hasn’t fathered 67 children. The number is more like 197.
Numbers you don’t want to see: The man donated to a single private sperm bank in Denmark named the European Sperm Bank (ESB), but his sperm was later used by 67 clinics in 14 different countries. The final number of affected children may be higher still, “as data has not been obtained from all countries,” the BBC added. It is not known how many of these children have inherited the genetic mutation, but only a small proportion of those who have done so will avoid developing some form of cancer in their lifetimes. People with the condition have a 90% chance of developing one or more kinds of cancer by age 60, and around 50% do so before age 40, according to the Cleveland Clinic.
Children are already sick: Edwige Kasper, a biologist at Rouen University Hospital in France, identified an initial 67 children during a presentation at the annual conference of the European Society of Human Genetics in May. At the time, she said 10 of the children had been diagnosed with cancers such as brain tumors and Hodgkin lymphoma, and another 13 were carrying the gene but had not yet developed cancer. They will require regular medical examinations due to their increased risk of developing cancer, and have a 50% chance of transmitting it on to their own children, Kasper said back in May.
Unreal odds: On Wednesday, Clare Turnbull, professor of cancer genetics at the Institute of Cancer Research, London, told CNN that “Li Fraumeni syndrome is a devastating diagnosis to impart to a family.” “There is a very high risk of cancer throughout the lifetime,” she added, “with a sizeable risk of childhood-onset cancers.” The case “represents a highly unfortunate coincidence of two exceptionally unusual events: that the donor’s sperm carry mutations for an extremely rare genetic condition affecting fewer than 1 in 10,000 people and that his sperm has been in the conception of such an extraordinarily large number of children,” she added.
The sperm bank spox responds: Julie Paulli Budtz, a spokeswoman for the European Sperm Bank (ESB), told CNN that the company is “deeply affected by the case and the impact that the rare TP53 mutation has on a number of families, children and the donor.” “They have our deepest sympathy,” she added. “ESB tests and performs an individual medical assessment of all donors in full compliance with recognized and scientific practice and legislation,” Budtz said, adding that the ESB supports calls for a limit on the number of children that are allowed to be born using a single donor. “The legislation on these areas is complex, with many and often conflicting considerations, and the implementation of the regulation differs greatly from country to country,” she added. “Hence, there is need for common and transparent European standards.”
“Fewer than 1 in 10,000 people” have this genetic mutation, and one who does happens to donate sperm, and that donation happens to be overused across a continent. It’s statistically insane and emotionally heartbreaking/infuriating. So yes, reform and regulations are grossly overdue. On everything from how many times a donation can be used, to how many times a single donor can make a donation, to restricting the transportation of donations, to the screening process itself for qualifying to be a donor, to a million other factors I’m not even thinking of. My heart goes out to the children and families affected by Li-Fraumeni syndrome as a consequence of this grave lack of oversight. And it also goes out to the sperm donor; I can’t imagine the weight he feels knowing the pain he’s unwittingly bestowed upon hundreds of people.
photos credit: Melike B, Helena Lopes and Yan Krukau on Pexels