(CNN) — a sperm donor with a rare cancer-causing mutation has CNN at least 197 children in Europe, according to a new study, some of these children have died of cancer.
The healthy donor carried a rare mutation in the TP53 gene, which is linked to lee-fomeni syndrome, a rare disease that significantly increases the risk of cancer. Remarkably, he didn’t know he had the mutation when he donated his sperm.
In May, CNN reported that the man had at least 67 children in eight European countries, and on May 10 several media outlets released a major survey showing that the actual number of children affected was much higher than previously estimated. The latest figures were compiled from freedom of information requests, doctor interviews and patient visits, according to the BBC, one of the 14 European public service broadcasters that took part in the survey.
The man donated sperm to a private Danish institution called the European sperm bank (ESB) , which has since been used in 67 clinics in 14 countries. The number of children ultimately affected could rise further“As not all countries provide complete data”, the BBC added.
It is not known how many children inherit the cancer-causing mutation, but medical data show that only a minority of those who carry the mutation avoid cancer in their lifetime. According to the Cleveland Clinic, people with the mutation have a 90 percent chance of developing one or more types of cancer before age 60, and about 50 percent of them will be diagnosed with cancer before age 40.
Edwige Kasper, a biologist at the University Hospital of Rouen in France, revealed key information at the annual meeting of the European Society of Human Genetics in May of this year: Between 2008 and 2015, at least 67 children from 46 families were born through the sperm of this donor. Of these, 10 children have been diagnosed with brain tumors, Hodgkin lymphoma, and other cancers, and 13 other children carry this mutant gene, which has not yet developed disease. Kasper said that these children carrying the mutant gene have increased cancer risk, need to undergo regular physical examinations, and have a 50% chance of inheriting this cancer-causing gene to the next generation.
Regarding this matter, Mary Herbert, a professor of reproductive biology at the University of Monash in Melbourne, Australia, said bluntly: “This survey highlights two urgent needs-a more comprehensive genetic screening of sperm donors, and a strict cross-border control mechanism for the number of children born to a single donor.”
Julie Paulli Budtz, a spokesperson for the European Sperm Bank (ESB), responded that the ESB conducted tests and individual medical assessments for all sperm donors in full compliance with recognized scientific practices and legal requirements, while also calling for limiting the number of children born from a single sperm donor.
She further added that legislation in the field of reproduction was inherently complex and involved multiple and often conflicting considerations, and that there was considerable variation among countries in the level of implementation of regulations, there is therefore an urgent need to develop a common and transparent set of European standards to fill the gaps in cross-border reproductive regulation.