Thank you Marcy Darnovsky of the Center for Genetics and Society, for shining a light on an issue that has been in the shadows or too many years. In her blog subtitled, "donor kids are growing up and speaking out," she writes about the importance of donor-conceived children having access to information about their sperm source.
"Donor-conceived children," writes Damovksy, "have been working for years to make the case that they, like adopted people in many jurisdictions, have a right to this information."
Damovsky makes a great point comparing children conceived with donor sperm to adopted children. And while for many children, it may just be a look-see, for others it is about retrieving medical information.
Our fresh and frozen gametes are checked extensively for several infectious and some genetic diseases. But beyond that, record keeping is piecemeal. What's more, the last time anyone in the U.S. tallied the number of ampules of sperm sold or babies born from them was in 1988 by the now defunct Office of Technology Assessment. It estimated 30,000 babies were born from donor sperm between 1986 and 1987. Since then no one has counted how much sperm is bought and sold nationally and how many babies are born from donor sperm or, most importantly, how many babies are born from each donor. There is no way to know whether your sperm donor baby has one or 50 half siblings. There is no way to know if the babies born from a particular donor suffer from the same genetically linked disease because no one is keeping track.
Most banks rely on parents to report back to them about the birth and the health of the baby. Frankly, with all the middle men involved in modern baby-making-not to mention everything else that comes with caring for a newborn-it's no surprise that checking in with the sperm bank is not top priority among new mothers. Roughly one in five women report back to the bank, according to a survey by Wendy Kramer, who runs The Donor Sibling Registry, a non-profit web-based service that connects donors with offspring.
A few years ago, a 23-year-old sperm donor found out he had a serious congenital heart defect, hypertrophic cardiomyopathy. Fortunately, he contacted the sperm bank, which was able to track 22 of his recipients, of which 16 got tested for the defect. Eight tested positively, two have symptoms of heart disease and one toddler died of heart failure. This case, published on the October, 2009 issue of The Journal of the American Medical Association, highlights-as the authors point out-the need to establish a national system so that donors and offspring are contacted immediately when medical issues are detected. This time the kids were lucky that their sperm donor was thoughtful enough to contact the sperm bank in the midst of his own medical crisis. Other children may not be so lucky.