DNA Matters: Psychological Differences in Donor Families

Source: retrorocket@123rf

Heritability

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.

Our DNA blueprint holds an immense amount of information about both our physical and psychological selves. When a trait can be passed on to future generations through our genetics we call it “heritable”.¹

Heritability is the proportion of phenotypic variation in a group that is attributable to genetics. It's a way to measure how much the differences in people’s DNA can explain the differences in their traits. It can give a sense of how important genetics are to a trait. Traits or disorders that are highly genetically loaded are cases in which a parent with a trait or disorder raises the probability that their offspring will also have the trait or disorder.¹

There is a large genetic component in many mental illnesses. The heritability of autism may be as high as 70%.² OCD, schizophrenia, major depressive disorder, alcohol dependence, and even completed suicides, are all influenced by genetics.³ 80% of people who are diagnosed with bipolar disorder are born with specific genetic mutations associated with that illness and the average age of onset is 25, long after most college kids retire from donating.⁴

Donor-conceived people (DCP)

Studies on DCP have repeatedly shown that a primary reason for searching for one’s biological parent or half-siblings is to learn more about their family medical history, current medical issues, and possible predispositions. A 2021 study asked 529 DCP if they were interested in contact with their biological parent/donor. 78% answered yes and 22% answered no. The 78% were asked for the main reason that they wanted to be in touch. While “to feel complete as a person” had the most responses (26%), more than 23%, wanted to learn more about their family medical history.⁵ Connecting with one’s close genetic relatives can be helpful, and even crucial for donor-conceived people.

Asperger's/Autism Spectrum Disorder(ASD)/Tourettes/ADHD

There are many positive strengths and difficult challenges presented within the broad spectrum of Asperger's/ASD. 1700 surveyed sperm donor recipients were asked, "Would you have purchased the sperm of a donor who had produced offspring with autism?" More than 93% said no, they would have chosen a different donor.⁶

One unstudied theory is that there may be a higher incidence of ASD (specifically high functioning autism, formerly described as Asperger's) among sperm donors. Anecdotally, quite a few donors with ASD/Asperger's have connected with families on the Donor Sibling Registry. Often, these families have large half-sibling groups that include clusters of children with Attention-Deficit/Hyperactivity Disorder (ADHD), Tourette's, speech delays, and kids on the autism spectrum.

Is it possible that ASD/Aspergers may sometimes contribute to that “disconnect” needed to donate sperm? Could it be a contributing factor to feeling less concerned about having (many) unknown biological children out in the world? Some men say they could never donate for this reason, so an emotional disconnect might make donating more attractive. Some have never been formally diagnosed: "I'm a donor who probably has Aspergers, and I'm aware that one of my donor children exhibits many traits of Aspergers. My child from my marriage also exhibits Asperger's and Tourette's symptoms.​"

Because reports like these from parents are not uncommon, it seems that more research is warranted:

• "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 (Tourette's) and ADD/ADHD."
• "My child has Pervasive Developmental Disorder [a group of disorders characterized by impairment in the development of social interaction, verbal and non-verbal communication, imaginative activity and a limited number of interests and activities that tend to be repetitive], nonverbal learning disability, mood disorder, and ADHD. Her doctor has raised the question of Asperger's. My donor's child with his wife has Aspergers & ADHD. The donor had ADHD & undiagnosed Aspergers." "3 half-sibs all have autism. The donor's profile on the sperm bank's website does not include this update!
• "I called my sperm bank after our child 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 donor's health info. The geneticist told me that they wouldn't take a specimen from an autistic person and that the staff 'would have known by meeting him' if he had ASD. 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."

Most donors are never contacted for a medical update

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.⁷ One respondent reported "As a donor, I updated my medical records between donations. They did not pass those updates on to previous donations or donations that came after those updates." Unfortunately, this is a fairly common experience.

Genetics Essential Reads

Genetics and Addiction: What We've Learned

Decoding Nature and Nurture: Insights From Twin Studies

In a 2009 study, more than 97% of 155 surveyed egg donors were never contacted by their clinic for a medical update while more than 34% said they had a medical issue that would be important to share. ⁸Thirteen years later, in 2021, these stats had only changed slightly: more than 94% of 345 surveyed donors had never been contacted for a medical update, 25% had medical issues to share, and 62% of those women felt that their clinic was dismissive when trying to notify them.⁹

One respondent reported, "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 offspring's family know. I am assuming, because it was 100% confidential ... they didn't seem like they were interested or were going to pass the information on."

There is a need for more comprehensive and regulated medical/psychological testing of donors before they donate along with regular updating and sharing of medical information. As many illnesses are adult-onset, without regular medical updates and information sharing, the gametes continue to be sold.

Source: Donor Sibling Registry

Looking ahead

Most DCP 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 and parents receive as a "donor profile" when the gametes are purchased only reflects one day in the life of a healthy young donor, what that donor wants the facility to know, what the facility wants you to know, and certainly not what happens after donating.

While many gamete selling facilities claim to conduct regular medical updates, this is rarely done. Donors with reported genetic physical or mental illness/issues should not have their gametes continue to be sold.

All medical updates should be available to all families who might purchase or who have purchased gametes, and all donors should also be aware of children born with any health issues. The importance of sharing important medical and psychological information goes both ways as donors may be building families of their own.