Studies on donor-conceived people (DCP) have repeatedly shown that a primary reason for searching for one’s biological parent and/or half-siblings is the importance of learning more about their family medical history, current medical issues, and possible predispositions. The most recent 2021 study asked 529 DCP if they were interested in contact with their biological parent/donor. 78.1% answered yes and 21.9% answered no. For the ones who answered yes, we asked for the main reason that they wanted to be in touch. While “to feel complete as a person” had the most responses (25.9%), a close second, 23.3%, "wanted to learn more about their medical history.*
Most people acknowledge the heritability of many physical attributes and diseases, but the correlation between genetics and psychological illnesses, disorders, differences, abilities, and traits is less understood.
Robert Plomin, who has studied twins and adoptees for fifty years, explains in his book, Blueprint: How DNA Makes Us Who We Are, that genetics accounts for 50% of psychological differences, not just for mental health and school achievement, but for all psychological traits, from personality to mental abilities. He believes that DNA isn’t all that matters but it matters more than everything else put together in terms of the stable psychological traits that make us who we are and that all psychological traits are heritable, about 50% on average. Plomin’s 1985 research** also concluded that genetics is generally responsible for about half the correlation between parenting and children’s psychological development.
While the parents that raise and love us (and who may not be genetically related to us) and our experiences do contribute to who we are, our DNA blueprint holds an immense amount of information about both our physical and mental selves. Genetic research results tell us that schizophrenia is 50% heritable, Autism is at 70%, reading disability is 60%, spatial abilities are at 50%, and personalty even scores a 40%.*** Knowing one’s close genetic relatives can be helpful, and even crucial for DCP to better understand their psychological selves.
These comments from Donor Sibling Registry members 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 as 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.
I was contacted by TSBC when my son was about 3, indicating 2 half-siblings had been diagnosed with Tourette’s, Tic Disorder, and ASD. At the time, we were uncertain of my son's diagnosis but clearly, there was something going on. Fast forward a couple of years and he was diagnosed with high functioning ASD, ADHD, and later bipolar disorder. My daughter had sensory processing disorder. We have been in contact with 3 half-siblings, two of which have mental health and neurological challenges. The one half-sibling male, one year older than my son, has the exact same diagnosis as my son.
My son has Asperger's, as do 4 of the 8 children we have made contact with.
Suppose a parent has a donor child, diagnosed with autism spectrum disorder. Then, one would find out the identity of a sperm donor (when the donor child is still young), only to discover that the donor has autism too, and apparently in a more serious way than the child (meaning, it should have been rather obvious for the donor bank when the donor offered his services). Can you hold a donor bank [California Cryobank] liable? Or are they under any legal obligation to refuse potential donors with autism? What do you need as proof, in order to start a case?
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 genome as both my boys.
I was an egg donor over 20 years ago ... I called the office where I donated and let them know about my son having ADHD, anxiety, bipolar, etc. so they could let the offsprings' family know. I am assuming, because it was 100% confidential ... they really didn't seem like they were interested or were going to pass the information on."
84% of 164 surveyed sperm donors were never contacted by the sperm bank for a medical update (most sperm banks promise yearly updates) while 23% indicated that they or a family member had a medical issue that would be important to share. “As a donor, I updated my medical records between donations. They did not pass those updates on to previous donations NOR donations that came after those updates.”
In 2009 97.4% of 155 surveyed egg donors were never contacted by their clinic for a medical update while 34.2% said they had a medical issue that would be important to share. Thirteen years later, in 2021, these stats only changed slightly: 94.3% of 345 had never been contacted for a medical update while 25% had medical issues to share. (Paper to come in 2022).
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.
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 is only reflective of one day in the life of a healthy young donor, what that donor wants the clinic to know, and certainly not what happens afterward. Regular medical updates are necessary as many mental illnesses are adult-onset, and sharing updated information among related families is imperative. 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 ASD/Aspergers among donors. I have heard from quite a few donors with ASD/Aspergers and also from families who discover that their donor has ASD/Aspergers once they connect on the Donor Sibling Registry. Oftentimes, these families 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 reported children with these issues, while some Autism studies report that 1 in 68 people have autism.
Is it possible that ASD/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. Food for thought....and for more 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 more 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.
* Data presented at the American Society of Reproductive Medicine 2021 meeting and paper to come in 2022.
** Daniels, D., & Plomin, R., 1985 Differential experience of siblings in the same family. Developmental Psychology, 21(5), 747–760
***Behavioral Genetics, 7th Edition, Valerie S. Knopik, et al, (Worth 2017)