Family Dynamics
The Problems With Donor-Sibling Groups of 50, 250, or More
Important medical, psychological, and social implications for donor offspring.
Posted February 27, 2024 Reviewed by Kaja Perina
Key points
- There are no actual limits on children born for any one gamete donor.
- Finding and connecting with a large number of donor siblings can be overwhelming and emotionally draining.
- Large sibling cohorts raise the possibility of unintentional romantic connections.
When the Donor Sibling Registry (DSR) was established in 2000, most parents and donors were told by the sperm banks that each donor would have no more than 10 kids. As time went on, parents and donors were told no more than 20 children would be born to any one donor. As DSR members started matching with each other, the small half-sibling groups turned into 50 and then 100, and now some groups are around 250. Between the DSR and DNA matches, many half-sibling groups are even larger. It's abundantly clear that the limits promised to donors and parents by the sperm banks were, and still are, false.
I had an employee from California Cryobank chuckle when I asked about limits. He then admitted they do not in any way limit how many people they sell vials. I had been told that my donor was limited to 10 families before my first purchase. Then was told limited to 25 families after reporting my son's birth. He then went further and tried to get me to understand they were a business selling internationally. When I reminded him they were a business engaged in helping to create life, it barely registered. When I said they should require reporting and tracking, he told me it would be impossible and the company would never do that. This industry needs regulation. —Parent
There is no entity keeping track. All birth reporting is voluntary. Published research reports that 45 percent of 1,700 surveyed sperm donor recipients had no request by the sperm bank or clinic to report the birth of their child(ren), and 31 percent of those say that the sperm bank is unaware of the birth of their child. Additional research studies show that between 22 and 28 percent of sperm donors donate to more than one facility, a statistic that further complicates keeping track.
I used Xytex, and my daughter has 100+ siblings, which is a disgrace. —Parent in Australia
Why are large half-sibling groups problematic?
There are many medical and psycho-social reasons why creating extremely large half-sibling cohorts is cause for concern.
Medical
If a donor has a heritable genetic medical issue, it could be passed along to dozens (or more) of their biological children. If a donor-conceived person (DCP) doesn't know all of their half-siblings, they're missing out on sharing their medical information and learning about genetic issues from others that might warrant proper screenings, monitoring, or preventive medicine.
There are several reports of donors passing on a genetic cardiovascular disease, hypertrophic cardiomyopathy (HCM) to DCP. In one case, nine of a donor's 24 known offspring inherited his asymptomatic HCM. At least one child has died.
Our donor, who has the genetic disease NF1 (neurofibromatosis) and whose currently known offspring number is a staggering 99 children worldwide. When the first child was diagnosed and reported to the cryobank, they waited 6 months to alert the clinics where the sperm was delivered. There are also reasons to believe that the sperm donor wasn’t properly screened. We know for a fact that 19 children inherited the disorder but not all children were tested on the disease. —Parent
This spreadsheet lists some of the genetic disorders and illnesses reported to the DSR by donor families.
Psychological
Many sperm donors feel boggled by the implications of how many offspring they may have. One donor who found out that he had 36 donor children had to take a step back: "I took a while to respond because I didn’t know what to do. I was overwhelmed.”
A donor with dozens or hundreds of donor children is less likely to connect with those kids, just because of the sheer number. They often worry about how to manage time and energy when dozens or hundreds of offspring desire contact, and how this might negatively affect their families. Donors worry about telling their spouses/partners, children, and parents about their donations and the potential for, or the known large number of half-siblings/grandchildren. It’s now common for adult children that a donor is raising and the donor’s parents to be shocked by the close DNA connections found on commercial DNA testing sites.
Because a gamete seller was careless by creating an unmanageable number of siblings, DCP in these large groups may never get the contact they desire. This is true for donors who were sold both as "anonymous" and as "open donors" whose donor children have grown up thinking they'll get to meet their biological parent when they turn 18.
Feeling like a commodity. Having a biological father who views you as another success story and a reflection of his fertility rather than seeing each of you as individuals and being prepared to get to know you and like you for who you are. Being able to reach out to your paternal family and receive a warm welcome rather than a cease and desist letter because your older sisters are horrified and quite unable to cope with the idea of hundreds of siblings coming out of the woodwork. All of this has been my experience of being part of a large sib group. —DCP
Social: random meetings
Random meetings are common. Consanguinity is a valid concern. A February 2024 CNN news report features the story of a DCP who unknowingly dated her half-brother.1
This Fairfax Cryobank group of 150 half-siblings that was featured in the New York Times in 2011 is now reporting that the group is almost 250.2 Another family reports that their group has more than 300 half-siblings from Midwest Cryobank. The larger the group, the more common random meetings will be.
I am a sperm donor baby from Texas. I have a twin sister. I recently did an Ancestry DNA test and found out that my half-sister is one of my best friends from high school. —DCP
When I was in my early 20s I worked at an orthodontist.... In my 40s I discovered that one of the patients I saw every 4-6 weeks was my half brother and the person that came with him was my other half-brother or my bio dad! —DCP
Reproductive health professionals and policymakers need to establish guidelines and ethical standards to address these concerns. If the cattle industry can successfully track births from artificial insemination, surely we can do better for humans. Ethical considerations in donor conception should involve finding a balance between providing individuals with the opportunity to conceive using donor gametes and ensuring the well-being of the resulting children and their families.
References
1. She took a DNA test. The results were horrifying [video]. CNN. 2024.
2. Jacqueline Mroz. One Sperm Donor, 150 Offspring. New York Times. September 5, 2011.
Donor Sibling Registry. 2009-2022 Catalog of Published Research