By admin on July 05, 2021

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.
This mom's phone call with California Cryobank had many Donor Sibling Registry members on our Facebook group discussing the numbers of their half-sibling groups, some over 100 and even over 200.

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.

A prospective parent was genuinely curious as to why these large half-sibling groups were even a problem. 
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.

I explained, that there are many medical and psycho-social reasons why 50, 100, or more than 200 kids from one donor is problematic:
  • 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.

From a Parent:
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.

From a Donor-Conceived Person:
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.

From a California Cryobank DCP:
...the donor refuses to meet, talk or provide any photos, even though he was a "yes" donor.

From a Donor with 36 Donor children:

"I took a while to respond because “I didn’t know what to do. I was overwhelmed.”

From a European Sperm Bank/Seattle Sperm Bank Parent:

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.

From a Cryos mom:
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.

From another mom in Australia who used a US Donor:
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.
From a DCP:
 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. 

From a Parent:
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! 

From a DCP:
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. 

This Fairfax group of 150 half-siblings that was featured in the NY Times in 2011 is now reporting in that the group is around 220 and one DSR mom reported to me privately that her child had more than 300 half-siblings from Midwest Cryobank.

From a Parent (yes, this one does take the cake):
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.

From a Parent:
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.

From a DCP:
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.

From a Parent:
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!!!

From a Donor-Conceived Person:
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).

A Mom in Canada Asked:
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.
My reply:

At one point I spoke with Health Canada, and they didn't seem too interested to hear about the issues with US sperm banks. I know there was a group in Canada working to get things changed, but I don't think they were too successful either as most Canadians using sperm now import it from the US sperm banks. So, I just don't know. Canada would have to pay donors, track and limit births (mandatory reporting), and then allow donors and parents to connect from pregnancy/birth, as there are no good ⁠reasons​ to work so hard to keep donors and families from each other for 18 years. And, it's just not possible.

And finally, from a Mom who used Pacific Reproductive Services: 
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.

By admin on February 13, 2021

California Cryobank On How Many Children They've Helped to Create:

Just in case you were tempted to believe California Cryobank when they tell you that they have accurate records on the number of kids they've helped to create, it sure looks like they've always been pulling numbers out of air.

CCB claims anywhere between 65k-750k estimated/registered births/families on their website, in press releases, and in media interviews between 2005-2020:

11/05: CNN:  Dr. Cappy Rothman is a pioneer in the field of donor sperm.(on camera): He founded California Cryobank in the mid-1970s, and estimated as many as three-quarters of a million babies have been born from his sperm bank alone, a daunting number considering there are now 150 sperm banks across the country.
3/06: 60 Minutes: The California Cryobank is one of the largest in the country, and has supplied the sperm to create as many as 200,000 babies.
7/06: According to Dr. Cappy Rothman, director of California Cryobank, one of the world’s largest sperm banks, single women and lesbian couples now make up half of his bank’s clientele, which ships about 2,500 vials of sperm each month. He estimates that his bank alone has been responsible for 75,000 children over the years.
12/07 The Atlantic: which helps about 10,000 women each year to conceive,.. [DSR Note: using this math, that would be up to ~300k already created, and their 2020 numbers would include ~130k additional kids]
1/20  This organization has collectively helped create nearly 100,000 families
1/20: AP: World's largest sperm bank 75,000 children born and Largest frozen donor egg bank in the US 5,000 children born
4/20: The Harvard Crimson “courtesy of California Cryobank” “California Cryobank, a sperm bank founded in 1977, has registered 75,000 births since its inception, making it one of the world’s largest reproduction agencies.” 

And now for something completely different. From Fairfax Cryobank:

11/15 and 10/18  Sperm banking fundamentals – Birth Statistics

The following background information on sperm banking was prepared by and agreed upon by the leading companies in the industry. Its purpose is to provide basic information about some of the key elements of a sperm bank’s operations and influence, and to further understanding by providing accurate and consistent information.

Birth Statistics: The popular press often cites the number of anonymous donor inseminated births per year at 30,000.

Although no industry-wide statistics are maintained, an unpublished survey conducted by the AATB suggests that a more accurate figure would be 4,000 to 5,000 donor inseminated births per year. This is calculated based on 1.5 vials per insemination, a 10% pregnancy rate per cycle, and a 20% spontaneous miscarriage rate.

By extrapolating this annual figure, the total number of anonymous donor inseminated births is estimated to be less than 130,000 over the last 30 years.

[DSR notes: Fairfax uses data from an AATB "unpublished survey" to extrapolate estimated numbers of donor offspring?  Which sperm banks contributed their grossly incomplete records to that survey?  The AATB, nor any agency requires or collects live birth data on sperm donor babies. [We noted the falsity of "30,000-60,000 donor children born each year" in 2015 and continue to contact major newspapers who still falsely use this number as fact.]

By admin on January 27, 2021

Adoptees have a Bill of Rights, so we thought donor-conceived people should too.

We borrowed and updated/edited the framework from the adoption community, as adoptees and donor-conceived people (DCP) share many of the same issues and struggles.

Dignity is the right of a person to be valued and respected for their own sake and to be treated ethically. It is of significance in morality, ethics, law, and politics as an extension of the Enlightenment-era concepts of inherent, inalienable rights

Rights are legal, social, or ethical principles of freedom or entitlement; that is, rights are the fundamental normative rules about what is allowed of people or owed to people according to some legal system, social convention, or ethical theory.

Rights are often considered fundamental to any civilization, for they are regarded as established pillars of society and culture, and the history of social conflicts can be found in the history of each right and its development. According to the Stanford Encyclopedia of Philosophy, "rights structure the form of governments, the content of laws, and the shape of morality as it is currently perceived".

These particular "rights" are about being heard, acknowledged, and respected when it comes to an infertility industry that still hasn't included DCP in its policy discussions. Since the beginnings of donor conception, policies have been set to include the rights of the facilities to sell the gametes, the rights of parents to buy those gametes to build their family, and the rights of donors to sell their gametes and to remain anonymous.  But this isn't an equitable situation as the rights of the donor-conceived people are never considered. We believe they should not only have a seat at the policy table but should also be listened to first and foremost.

Mandating 18 years of anonymity only serves the best interests of the sperm banks and fertility clinics. They've continually tried to scare parents and donors into believing that this mandate is in their best interests by telling them nonsense about custody battles and non-existent donor rights and responsibilities. 18 years of forced anonymity is definitely not in the best interests of donor-conceived people. When we connect parents and donors right from pregnancy/birth and early childhood, it's a win-win-win-win for the clinic, the parents, the donors, and the children.

This is a working document that has had encouragement and contributions by DCP, donors, and parents. Suggestions/input from DCP is welcomed and encouraged.

"People actually created via reproductive technology almost never have any say in the legislation that overwhelmingly affects us most of all. Our entire lives are lived in this shadow. This is why our motto is "Never about us without us." WE need to be the ones declaring our rights, and all parents, be they recipients or donors, should support our efforts. I'd add that we have the right to our true and full identity. This might be considered progressive, but I'd also add that we have a right to a relationship with all biological and legal parents from day one.  I understand many people might resist such a proposal, including some DCP, but this feeling may well be conditioned by experience or fear. If people grew up knowing their immediate biological family from the very beginning, it would be totally natural and no one would question, just like no one questions knowing their sisters, brothers, aunts, uncles, and grandparents." Albert, a DCP

"I am a donor who, through the DSR, started meeting my bio offspring when they were as young as 3 years old and, in every case, it has been a mutually rewarding and wonderful experience for all involved." — Mike, a Former Donor

"We will relish the hard work ahead. It will not be easy, but it will be worth it. If not for us, for the donor-conceived people of the future and their kin and families. With hard work and collective action, we will make progress".
Tyler, a DCP

Allison, a parent asks," Is there concern that the number of persons interested in making sperm or egg donation could drastically decrease if they must be known?" The answer is probably yes. If all donors were properly educated and counseled about the end of anonymity and the lack of record-keeping that could create 100 kids or more, the number of donors just might decrease. That might be the cost of running a more ethical and responsible donor conception industry.

 The Donor-Conceived People's Bill of Rights

  1. We have the right to dignity [the right to be treated ethically] and respect.

  2. We have the right to know that we are donor-conceived and we have a fundamental right to our full identities, which includes knowing our immediate biological families from day one.

  3. We have the right to an accurate birth certificate reflecting this information. Our birth certificate should list all legal and biological parents.

  4. We have the right to possess all of our donor-conception records.

  5. We have the right to full knowledge of our ancestry, origins, ethnic and religious background, our biological parent’s names, and any pertinent medical, legal, and social details.

  6. We have the right to updated medical and legal histories of our biological parents.

  7. We have the right to not have an indecent number of half-siblings (more than 20, 50, 100, or 200), to know how many half-siblings we have, and to know who they are.

  8. We have the right to be curious about, to search for, and to grow up knowing our biological parents and half-siblings, like all other citizens. These relationships with our biological kin should be treated with dignity and respect.

  9. We have the right to live without guilt toward any set of parents.

  10. We have the right to treat and love all of our parents as one family.

  11. We have the right and obligation to show our feelings about being donor-conceived.

  12. We have the right to become whole and complete people. For many of us, we can't fully understand who we are until we know who and where we come from.

  13. We have a right and obligation to ensure the dignity of all donor-conceived people and to carry our message to all of them and their families and to address this need in the public eye and specifically with the reproductive medicine industry.