The Medical Pit-Falls of Sperm Donation

For those of you who don't hang out on the internet or watch late-night news shows, you may have missed the story: a man who donated sperm to an unnamed San Francisco sperm bank while in his 20's has recently been diagnosed with Hypertrophic Cardiomyopathy, a potentially deadly heart defect that causes sudden death in people previously believed to be completely healthy. It is already confirmed that nine of his 22 off-spring inherited the condition, one of whom died from the disease at age two. This story highlights the medical concerns raised by using young, anonymous sperm donors to assist in the conception of large numbers of children. This is not a situation where anyone acted irresponsibly -- according to all accounts, the sperm bank followed appropriate testing protocols in place at the time the donations were made (although apparently those protocols are now being revised to include a donor EKG); and the donor disclosed all known medical conditions at the time of his donation, without withholding any pertinent information. There are no villains here. I actually have a friend who donated sperm in his 20's, through a local sperm bank (maybe even the same one in the story -- I have no way of knowing for certain, since the sperm bank remains unnamed), believing that he was completely healthy. His mother and one of his sisters have since died of breast cancer, and testing has shown that his family carries a genetic trait that greatly increases the breast cancer risk for his female off-spring. As the father of two daughters that he is parenting, he knows what steps he will take to care for them and protect them as they grow older. He wishes that he could effectively let the parents of any female donor off-spring know that they should do the same. But he has no way to communicate with them, since his sperm donations were anonymous. These stories certainly point up something many in the fertility industry have long acknowledged: that the risk of passing on genetic diseases through egg and sperm donation cannot be avoided, and all pretenses that a family can protect against this risk by choosing a "perfect" donor are just that: pretenses. Further, they point to the need for a uniform system for passing medical information between "anonymous" donors and the families of their genetic offspring that protects the autonomy of both donor and recipients, while assuring timely communication of important medical information as needed. Hopefully the American Association of Reproductive Medicine, the Society for Assisted Reproductive Technology, and other like groups will address this issue promptly.