Do sperm banks and egg clinics reach out to donors regularly/annually to update their medical information, like so many promise to do? Nope.
Do they keep accurate records on the children born from any one donor, in case of a medical emergency? Nope.
We recently had another (California Cryobank) sperm donor frantically trying to find/contact the families who had children from his donations because of his recent diagnosis of HCM (Hypertrophic Cardiomyopathy), a serious and genetic heart condition. He was never contacted by California Cryobank for a medical update and because the sperm bank has no accurate record-keeping on all of the children born from his donations, there will be no way to notify all the families that these children need immediate medical attention.
From the donor:
"The condition is 1) genetic, with dominant inheritance, 2) serious, resulting in sudden death in a small but significant portion of affected individuals (my DCP matches are entering the highest risk 15-24 age group), 3) silent - sudden death is often the first "symptom", so the condition is unlikely to be diagnosed from earlier, milder symptoms, and 4) proper medical management reduces the risk of death to nearly zero. Because of those factors, medical guidelines call for immediate screening of first-degree relatives.
This article in JAMA is about another donor with HCM, where sadly one of the children had died.
From our published research on sperm and egg donors:
2013: 84% of 164 surveyed sperm donors have never been contacted by their clinic(s) for medical updates while more than 23% of the donors felt that they had medical/genetic issues that would be important to share with families. While 16% had had a follow-up, most of these were due to advising that a child had been born that had a medical condition with the facility seeking further information from the donor, This would seem to suggest that follow-up contact tends to be on the basis of a medical issue which has emerged in the child and with a request for more information.
2009: 96% of 155 egg donors have never been contacted by their clinic(s) for medical updates while 31% of the donors felt they had medical/genetic issues that would be important to share with families.
2021: 94.3% of 345 surveyed egg donors were never contacted for a medical update while 24.4% indicated that they did have a medical issue that would be important to share with families.
47.7% attempted to share this information and 62% felt that the clinic was "dismissive".
47.7% attempted to share this information and 62% felt that the clinic was "dismissive".
Hundreds of medical issues have been reported publicly and via the Donor Sibling Registry.
Here is a partial list of genetic illnesses and disorders reported by donors and recipient families.
One sperm bank currently has this posted on their website: "All donors are asked to inform us of changes in their personal or family medical histories that occur." Yet over the years, most families were told that their sperm bank collected annual medical updates from donors. All too frequently we hear from donors and families who were not able to successfully report share urgent medical information:
I reported to the sperm bank that my child was diagnosed with cancer (lymphoma/leukemia) the same week of his diagnosis and provided proof, so they could report it back to the donor and to the other families who had used the same donor. Almost two years later, none of the 11 families I am in contact with have been notified about my son's condition.
My older son is donor-conceived (sperm). The cryo bank (CCB) did discover that the donor seemed to have a genetic disorder (he reported it to them). This was after my son was born. CCB did not attempt to contact me to tell me. I only found out when I called them to see if I might be able to contact my donor. Otherwise, I would never have known. I also contacted CCB when my son became psychotic at age 14; they did not contact his half-sister and let her mom know.
Over the years a couple families in our DC family reported to Fairfax a high rate (1 in 5) of neurological disorders in the group. I called Fairfax a couple of days ago and the genetics counselor claims that no one has called in.
I used an anonymous donor to conceive my son in 1992. When my son was 15 I was able to locate the donor and made contact, but he never responded. While researching his family tree, his sister made contact to tell me the family suffered from a genetic defect of the aortic root, resulting in aortic aneurysms in her mother and three brothers, including the donor who suffered an aortic dissection in 2007. He
survived, but he never reported this genetic defect to the three banks where he donated. It is autosomally inherited, meaning that 50% of all children from this donor will inherit this defect. It is a silent killer. Most people don't know there is a problem until the aorta dissects, resulting in death 80% of the time. After having my son checked out at Johns-Hopkins, he also had an aortic aneurysm growing in his chest at the age of 17. It was surgically repaired, and he has to be followed with annual echocardiograms for the rest of his life. If I hadn't located the donor, and his sister hadn't located me, I would never have known about this potentially deadly genetic defect. I contacted all three sperm banks, but none of them would take my word for it, even though I had the donor's name and my son's doctor records.
We used Idant, which did not do any psychological screening. By the donor's own admission when meeting him 20 years later he suffers from bipolar disorder and was hospitalized as a teenager. My daughter suffers from bipolar disorder a highly genetic disorder. One of his other offspring completed suicide when she was eighteen. Another was in residential treatment as a teenager and then prison as an adult. He donated twice a week for two years.
My Fairfax ID donor committed suicide in 2013. I learned of his death one week after the birth of my second child in 2016. That means I posthumously conceived one or both of my children with a Fairfax Cryobank donor. I did not consent to this, and I do not know if the donor would have consented to this.
I am a lawyer who has, unfortunately, had to represent too many couples who had a child born with donor sperm that was not tested for common genetic diseases, even though the cryobanks represented that such genetic testing was performed.
I'm a carrier of cystic fibrosis, and my mother is not. That means my donor was a carrier of cystic fibrosis and had passed the gene on to me.