Half-Sibling Cohorts of 100 or 200 or More: What's the Problem?

When the Donor Sibling Registry was first established in 2000, most of our members thought that each donor might have a handful of offspring, as many of us were told by the sperm banks that each donor would have no more than ten kids. As time went on, some of us who had children later in the 1990s and into the 2000s were told no more than twenty. Over the years, as our members started matching with each other, the small half-sibling groups turned into 50 and then 100 and now more than 200. It's abundantly clear that the limits and numbers we were all given by the sperm banks were and still are false. 

Some report that every time they call the sperm bank to inquire about the number of offspring for our donor, they get a wildly different number, depending on who answers the phone that day. I was once told "three", then shortly after that, "nine".  A few years ago, on an invited visit to California Cryobank's office, my son Ryan was told that they had a record of one half-sibling. He currently has twenty-one donor siblings and many of our donor 1058 families were promised no more than ten by California Cryobank. 

A sperm bank can not know how many children are born from any one donor, as reporting births is voluntary. Our research has shown that 45% of our surveyed 1700 sperm donor recipients had no request by the sperm bank or clinic to report the birth of their child(ren), and 31% of those say that the sperm bank is unaware of the birth of their child. (42% of our surveyed 108 egg donor parents were also never asked to report their births). Sperm banks must stop misleading sperm donors and parents about their ability or concern in regards to limiting the number of children born to any single donor. Additionally, our research showed that between 22%-28% of donors donate to more than one facility, a statistic that further complicates keeping track.

I just had an employee from CCB 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 donor was limited to 10 families before my first purchase. Then was told limited to 25 families after reporting my son's birth. Explained I was nervous seeing that we were at 11 families knowing that not all people report. He actually laughed. I mean it was a chuckle, but still, laughed at the idea of limits. Told me that to be put on sibling restriction you had to have anywhere from 15-20 families report and so we were "at least" at that point since he was restricted. I was too annoyed to ask why it would vary between 15 to 20. But, he goes further and said there is actually NO LIMIT to how many people they will sell to before they hear back about pregnancies/live births.

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. When I said it could be made part of the contract that you had to report, he told me people from the company would not follow up with us as it was too sensitive a topic. They wouldn't want to cause further harm if they followed up only to find out we had losses.

I swear these people are unbelievable. I realize I am preaching to the choir here, but I just had to share my frustration with someone. I love my son and would not want to change having him. But, I so wish I had been more educated about the lack of regulation ahead of time. This industry needs regulation.

So I have to ask. Why does it matter? Like why do you care how many families benefit from one donor? Not being rude. Just generally curious. I have never even heard of this issue.

• If a donor has a heritable genetic medical issue, it could be passed along to dozens of kids. ⁠If a donor-conceived person doesn't know all of their half-siblings, they could be missing out on sharing and updating important medical information. There could be a genetic issue that would warrant proper screenings, monitoring, or preventative medicine.
• A donor with 50, 100, or 200+ kids is less likely to connect with those kids later on, just because of the sheer number. So kids in these large groups who desire contact with their biological father may never get it, just because the sperm bank was careless. 
• While sperm banks try and minimize the possibility of random meetings, this is an all-to-common experience. With that many offspring, meetings are much more likely.

Nordic Cryobank/California Cryobank donor 7042 "Ralph", who has the genetic disease NF1 (neurofibromatosis) and whose currently known offspring (at the time) number "a staggering 99 children worldwide, of which 34 [were] conceived in [the U.S.]. When the first child was diagnosed and reported to the Cryo Bank in June 2009, the sperm bank waited 6 months to alert all 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.

Feeling like a clone; feeling completely overwhelmed by the enormity of the situation; the inability to have meaningful relationships with that many siblings; bearing the burden of siblings' grief/shock when they discover they are DC and make contact; being rejected by siblings; being unsure whether to reach out and connect because you don't know whether the sibling even knows they're DC; walking down the street and wondering if someone who looks similar is a sibling, etc. My 10 yo has told me she'll look for all of her siblings (100+) until she dies. This is a terrible burden for her to carry.

The banks need to take accountability for that aspect. At the moment they leave 100% onus on recipients to report a birth, which many many people don't do. For the banks, this policy is super convenient. I.e. they can keep on selling gametes and maximising the income they receive from each donor, while taking no responsibility for the harm they're causing to the DC people being born.

Plus, 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.

...the donor refuses to meet, talk or provide any photos, even though he was a "yes" donor.

My kids were found by my donor’s family [via DNA] and they are messaging my kids to connect.  I am trying to get a hold of the donor to make him aware of the situation and ask his permission.   [Update]: I actually found our donor (amazing guy), he is fine with us, but I think if he understood there was 75-100, he’d flip out. We were also told 25 families was the limit.... but now they are saying 25 in the US. They said he was also sent to Canada and Australia, but we know of families all over Europe.

I have friends in Australia who followed all the rules and picked an identity release donor with less than 5 families in Australia. It was only after they conceived that they discovered he has donated all over the place and is hitting 1000 with nothing to stop him from continuing to sell his sperm.

I used an overseas donor, and travelled to another state for treatment. While looking for half siblings I found some in 4 different countries and also a donor-conceived girl who lived 200 metres from my mums house. She’s around 1 year younger than my son.

 I work about 75 steps from my recently found 1/2 sister’s apartment which is on the same block. I walk past her door every day. If one of us was a guy it could have been us. 

2 half siblings not only lived in the same city in Canada ,went to the same college, had the same major (one year apart) but had mutual friends and were at the same parties having NO idea they were half siblings! The year after they found out they were in the same class and sat next to each other. Oh the stories I could tell about all of this is insane! 

My full sister and one of our half brothers were in the same major, in the same graduating class, at the same university, and didn't know they were related until their senior year. 

My kids' half-sibling group is close to 100, and we've already had a few kids cross paths randomly -- but this one takes the cake! My (gay) daughter recently matched with a half-sister on Tinder! Luckily the other girl had recently learned she was donor-conceived and had connected with our group. The two girls had a bit of a laugh about it in their Tinder text exchange, but this situation illustrates the importance of TELLING your kids about their donor conception and TALKING about the possibility of encountering half-sibs out in the world.

The donor lives in the same area he did while donating as do many of the 1/2 siblings.  Through this process, we have found that:

• Two siblings worked out together in college daily and were good friends.  
• Four siblings (so far) went to the same college with a similar major. 
• One sibling grew up and their family still lives just blocks away from us.
• Some siblings attended the same elementary school and high school (though at different times).
• The donor's "home" children were teachers to my children for 3 years.
• One of the donor's children teaches at the school that my child attends (but doesn't know about us).
• One sibling, a police officer, just found that the strange man, he watches, handing out literature at store fronts, was his donor.

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.

I just had a very crazy experience. My daughter was invited to a birthday party of her classmates. When I saw the invitation, I immediately thought that they looked like my daughter. Long story short my daughter is in the same preschool class as her half brother and sister. They are only 6 days apart in age. What are the chances!!!

The vast majority of DCP are totally unaware of their status. In my sib group (hundreds) not one of us was told. Genetic sexual attraction is definitely a very real thing. Even if you know before you meet a sib you can get really confused when you fall in love - the rush of feelings and wanted to be with this person you connect so well with is totally confusing (and we are all mature, well educated etc).

Do you think if we were able to get the human assisted reproduction act reopened in Canada such that it would allow sperm banks in Canada to pay donors and if the Canadian government were to regulate the industry so as to limit the number of children do you think that could work or would the American associations overpower the system here too? I may have found a way to get the act revisited here but there’s no point if we end up with the same problem. I know you don’t have a crystal ball. Just curious about your opinion.
 

How can you even know?  All us moms were given different numbers. They shipped his sperm to other places which he wasn’t aware of either.