These two recent comments submitted to the The Donor Sibling Registry’s FDA Citizen’s Petition highlight the need for more comprehensive medical testing of donors, including psychological evaluations, the intake of complete family medical histories, and continued updating and sharing of medical information reported by donors and families.
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. When we were making the critical decision on who would be biological father of our children, we specifically required two things: 1) the donor had to be an "ID option" donor so that our children would have the access to learn as much, or as little, about their biological father as they desire; and 2) the donor have no history of mental illness.In the two sentence informal letter I received in 2016, Fairfax advised me that the donor committed suicide in 2013. Fairfax said they last got a medical update on the donor in 2013 and no mental illness was reported or "noted by any staff member". As a result of Fairfax's lack of action, my children have not only lost their right to seek out their donor at age 18, but they also may or may not have inherited a predisposition to suicide. Fairfax still has this donor listed on their website as "inactive" - with no indication whatsoever that he is dead. This is unconscionable. The FDA needs to step in and regulate this industry on a federal level.
I am a donor offspring (1953). My bio father turned out to be my mother's very own physician. She was assured that it would be a resident from the hospital, but he confessed to her later, when she asked him about the color of my eyes. They looked like his. He died at the age of 41, very young. I was told about him when I was in my early teens, and she gave me a copy of his obituary and a photograph. My son was 16 when he ended his life. I have battled depression for years. I decided to research my paternal side and was shocked by my findings. Both of my paternal grandparents died in a psychiatric hospital in Iowa. I sent for copies of the medical records and found that my grandfather suffered with psychosis and my grandmother lived out her life in a catatonic state. My bio father had a son, who ended his life by an overdose, when he was in his early 30's. My bio father had one brother and three of his children ended their lives. One drove her car over a cliff and the other two overdosed on prescription medication. I found a history of depression, schizophrenia and bipolar disorder in the family. I went back further in the family tree, and there I found self inflicted gunshot wounds, overdoses, and one even took poison. My paternal grandfather was really unbalanced. He was a bigamist and married to four different women ( no divorce) that he simply walked away from. He walked away from his first two children as well. That is not normal. I have many serious health problems as a result of that donor. Unfortunately, so do my children, and now my Four year old grandson is showing signs of a disorder.
All medical updates should be available to all families who have purchased the gametes of any one donor, and all donors should be aware of children born with any health issues.
Both nature and nurture contribute to many psychological and mental disorders. But most donor conceived people know little to nothing about the family history, or the ongoing psychological health of their unknown genetic relatives. The self reported medical information that donors submit are only reflective of one day in the life of a healthy donor, what that donor wants the clinic to know, and certainly not what happens afterwards. Regular medical updates are necessary as many mental illnesses are adult onset, and sharing updated information among related families is imperative. Additionally, donors with mental illness/issues or groups of half siblings with mental illness/issues should deter sperm banks from continuing to sell that donor’s gametes.
The Donor Sibling Registry has high numbers of large half sibling groups reporting children with these issues:
I have had a theory for a while that there is a higher incidence of Aspergers among donors. I have heard from quite a few donors with Aspergers and also from families who discover that their donor has Aspergers once they connect on the Donor Sibling Registry. These families oftentimes have half sibling groups that have children with ADHD, Asperger's, Tourette's, and with kids somewhere on the autism spectrum. 36% of our 1700 surveyed sperm donor recipients report children with these issues, while some Autism studies report that 1 in 68 people have autism. Very interesting!
My theory about donors is that Aspergers may sometimes contribute to that “disconnect” needed to donate sperm: to not be concerned about having (many!) biological children out in the world that they’ll never know. I know a lot of men who say they could never donate for this reason, so I do think there is some level of emotional disconnect needed. Again, this is my opinion/theory, and not backed up by any actual research.
From one donor:
“I'm a donor who probably has Aspergers, and I'm aware that one of my donor children exhibits many traits of Aspergers, but his mother hasn't formally diagnosed him. My son from my marriage also exhibits Aspergers and Tourette's symptoms."
From a few parents:
"I have 3 children, all from the same donor. One is PDD (High Functioning), the other 2 are ADHD. In our siblings group there are is a pair of autistic twins and one other PDD child, and I think also at least 2 ADHDs."
"..we also have a high rate of autism diagnosed among the boys in the sibling group (we have 60 families)". We have multiple offspring with tics (including several with Tourette's) and ADD/ADHD."
"My daughter has pdd-nos, nonverbal learning disability, mood disorder-nos and adhd. Her doctor has raised the question if Asperger's. My donor's daughter with his wife has Aspergers & adhd. The donor had adhd & undiagnosed Aspergers."
"I had genetic testing on my 2 boys that were conceived from the same donor. They inherited a mutation. On a gene that is known to cause autism and Rhett syndrome. Both of my boys are autistic. One of their donor half siblings who is also autistic just received genetic results and she also inherited the same mutation in the same exact spot in the her genome as both my boys."
“I noticed on a Facebook site that 3 half-sibs all had autism ... I checked and that donor's profile did not include this update! The mothers reported it but the clinic decided not to 'update' the donor's profile cause they said there was no proof that autism is genetic!”
“We used California Cryobank, and I actually called them after our daughter was diagnosed with autism and anxiety disorder, just to ask why they did not, and maybe they should, ask these types of questions on the donors health info. The geneticist told me that they wouldn't take a specimen from an autistic person, that the staff "would have known by meeting him" if he had ASD. Ha! People with ASD go their whole lives without being diagnosed...you cannot tell by LOOKING at someone! I was surprised and disappointed at their lack of knowledge on it.”
If you have a story to tell, an expert opinion, or just want the FDA to hear your voice, please add a comment to our FDA Citizen’s Petition: Becausethe FDA currentlymandates only minimal medical testing of sperm and eggdonors (no other regulation exists), we request that the commissioner of the FDA look into the state of affairs surrounding the sperm donation industry, and then develop the appropriate and much needed regulation/oversight.