By admin on September 03, 2021

Today, September 3rd, 2021 marks the Donor Sibling Registry’s 21st anniversary!


This was our very first posted message:
 
I am the mother of an awesome 10-year-old donor child. I know that he has at least 3 donor siblings and would love to contact them. We are looking for Donor #1058 from the California Cryobank. I hope that this board will serve others looking for their children’s (or their own) siblings.

During the DSR's first few years, we worked tirelessly to convince the sperm banks and the egg clinics, the reproductive medicine Industry, and many parents that disclosing the truth to offspring was necessary and that it should happen early in a child's life. Yet back then, fear, shame, and embarrassment of infertility still overruled honesty in the majority of heterosexual donor families, as the Industry recommended (and benefitted) from this silence and shame-based secrecy.  Only a few organizations, like the Infertility Network in Canada, challenged this idea. Now we have dozens of published research articles illustrating why early disclosure is best.

At conferences where we regularly present research on all of the stakeholders, I've spent countless hours in face-to-face meetings with sperm banks and egg clinics pleading for them to read our published research and re-examine their policies. While sperm bank policies haven't changed much, donor families have been evolving. So many more parents understand the importance of early disclosure, a child's right to know about their origins, and the importance of acknowledging and honoring their child's curiosities about their unknown genetic family and the importance of making these connections, long before the age of 18.  These days, I frequently consult with parents who are about to tell their adult children as they just can’t carry the secret any longer, and feel guilt over not being honest with their children. Most were advised to never tell. Now, even the American Society of Reproductive Medicine (the ASRM) has finally, in recent years, begun to advise early disclosure.  

Early on, we began to examine and tackle the issue of donor anonymity, long before DNA testing blew anonymity completely out of the water in 2005. While many egg clinics connect parents and donors from pregnancy/birth via the DSR, the sperm selling industry still misleadingly sells every single vial of sperm as anonymous, be it for 18 years or forever. Not a single sperm bank will facilitate such early connections and many won't honestly acknowledge or properly educate their clients and donors that maintaining anonymity is no longer possible.  The American Society of Reproductive Medicine's continued silence on the topics of anonymity and about the needs of donor-conceived people to know about their ancestry, family medical history (and updated information), and close genetic relatives speaks volumes.

The DSR now has more than 75,750 members and has now facilitated more than 21,100 connections. While warming to the idea of half-sibling connections, many parents still insist that the donor is only a contributor of "a cell" or "a piece of genetic material" and has no importance or place in their children’s lives.  While that might be the case for parents, the "donated cell" actually contributes around 50% of a donor-conceived person's DNA and therefore affecting many of their health, mental, and physical characteristics.  As more donor-conceived people tell their stories publicly, we'll keep hearing about the importance of knowing their close genetic relatives, and about their ancestry and family medical history. 

We’ve worked very hard to convince the sperm and egg selling industries, donors, and parents about the importance of connecting donor-conceived people with their close genetic relatives long before they reach adulthood. At first, this idea was novel and many threw up their arms in outrage, proclaiming a donor’s right to anonymity and denying any importance of a genetic connection. One LGBTQ organization, the Family Equality Council, proclaimed that "DNA doesn't make a family!" and some parents claimed, “those people are not your family!” (from the parent of one of my son’s 21 half-siblings). We held our ground as we watched match after match on the DSR have a profound impact on donor-conceived people, parents, donors, and their family's lives as the meaning of "family" expanded and lives were enriched.

In no other segment of the population is it accepted practice to deliberately keep people from their close genetic relatives (eg. biological parents, half-siblings, aunts, uncles, grandparents) until adulthood, or even forever. How the reproductive medicine industry still sells this idea as in the best interests of all stakeholders, most importantly for donor-conceived people, is utterly baffling to me. How will history judge this practice that actively works to keep people from their close relatives, ancestry, and medical histories?


We’ve waved our arms for years about the Industry's lack of accurate record-keeping, their subsequent inability/refusal to track and then limit the number of children born to any single donor, and their inability/refusal to update and share medical information amongst families and donors. Sadly, 21 years later, these issues are far from being acknowledged and therefore resolved.

In the meantime, we'll keep giving it our all. Kudos and thanks to all of our Donor Sibling Registry donors, parents, and donor-conceived people that have been brave enough to tell their stories publicly, in the media, and via our website.  Each story and testimonial pushes for a more moral, ethical, just, integrious, and accountable donor conception world, honoring all stakeholders, but putting the needs and rights of donor-conceived people first and foremost.

A huge thanks to all who have supported our work over the years by paying for DSR membership. Without you all, we wouldn't have been able to accomplish all that we have.



Nate's mom Jennifer was the 2nd mom to join the DSR in 2000, acknowledging the importance of her son connecting with his donor family. Nate met his biological father Cliff through the DSR twelve years later, and he now knows of eleven half-siblings. Here's Nate and Cliff with a half-sister, Billie, and her fiance Mike.



By admin on August 11, 2021

Donor-Conceived People Desiring Contact With their Biological Parents (Donors): What's It All About?


It Is About:

  1. Learning about my ancestry.
  2. Learning about my family medical history
  3. Learning about my other close genetic relatives, eg. grandparents and half-siblings.
  4. Wanting you to acknowledge that I exist.
  5. Wanting you to know that I am someone you can be proud of.
  6. Wanting to give you the opportunity to know me. 
  7. Wanting you to know that I will respect your boundaries.
  8. Wanting you to understand that this connection could enrich all of our lives.

It Is Not About: 

  1. Money, eg. paying for my education.
  2. Looking for a dad or a mom.
  3. Invading or disrupting your family or your life in any way.


By admin on August 02, 2021
 There is overwhelming evidence and therefore good reason to question, doubt, and challenge the way that sperm banks present, promise, and follow through with their "open donor" policies. 
 
The concept of “open” or “open identity” or “identity-release” or “willing-to-be-known” donation is simple:

  • A young man sells his sperm to a sperm bank as an “open” donor: he agrees to have contact with the children he helps to create when they turn 18.
  • Parents wanting a child purchase that man's sperm from the sperm bank. Vials of this anonymous-for-18-years sperm can be more expensive than anonymous-for-ever sperm.
  • A child is conceived, parents are thrilled, the sperm bank makes money, and the donor expects to stay anonymous for 18 years. 
  • The resulting child expects contact with their biological parent when they turn 18 (if desired).
 
Many thousands of donor-conceived people (DCP) have grown up thinking that they’ll get to know their biological father when they’re 18. But, for many years we’ve been hearing from families who purchased anonymous-for-18 years sperm, only to find out later on that this is not the case.  
While there have been many happy connections made between adult DCP and their biological fathers via the sperm banks, all too often sperm banks:

  • Don’t respond to calls or requests from DCP or never follow-up;
  • Claim that donors can’t be found (sometimes this is just not the truth);
  • Claim that the donor has refused contact (sometimes this is just not the truth);
  • Claim that a donor is anonymous-forever, even though the donor signed up to be an open donor or had no choice and has since made it clear to the sperm bank that he is open to contact.
  • Refuse to give donors their own donor number.

From A Fairfax Parent:
We recently identified our donor via DNA testing and a geneticist. I sent him a message yesterday and he said he had called the bank (Fairfax), and asked to change his status to known, and they would not do it. He said at the time of donation (20 yrs ago) they did not give him the option to be known but he told them he was ok with contact. My point is, they DENIED him and the families this option.  He said he anxiously awaited the day he would be found. It angers me that the bank took it upon themselves to deny his request.

From Two Fairfax Cryobank Donors:
I, too, donated more than 20 yrs ago at Fairfax. I’ve tried all methods of which I could think to get Fairfax to open my record to anyone seeking it. They denied me every time, and have continued to deny me. They wouldn’t even tell me my own donor number. Fortunately, one biological son found me on the DSR.
--
Fairfax listed me as anonymous even though I had signed several documents that allowed for my information to be given out.

From a Fairfax Parent:
I have the same situation - a donor who was a yes and then turned into a no. I was told that a donor has the right to change their mind about being contacted and that this is what happened in our situation.
 
From a California Cryobank Donor's Wife:
The only time we have ever heard from the Cryobank was in 2010 (he donated 2003-2005) to inform him that he would be "retired" because a child was born with a medical issue.  At that time, they informed him that he would be receiving surveys, etc. to update his contact and medical information, which he never received.  They have never reached out for updated contact information.  He has reached out twice and been told he would receive surveys via email, which he has not.  Is this typical?
My husband matched with a family via DNA and the mother told us that CCB told her that her donor "did not want communication”. We were upset to hear the mother was told we did not want contact and that we had agreed to be contacted by the donor-conceived children.
 
From Three New England Cryogenic (NECC) Parents:
I chose a “yes” donor/donor release option, have paperwork saying the info will be released to my daughter once she’s of age, yet the owner of the bank is not honoring the agreement, and wouldn’t even return a phone call for months, then after one okay/civil conversation, in which she agreed to call me back with no information...completely disappeared and never called back.
--
 
We have been trying to work with NECC to contact our identity release donor for months now and are not having any luck hearing back from them as to the status of our request except that they have the paperwork needed to move forward. Phone calls and emails are not returned.
--
I am going through this with NECC now! It is dragging out to months and I can’t get any info from them as to what is taking so long. They acted like this was the first request for donor contact they had gotten.....
The sperm banks are too often failing to provide DCP with what both the donor and the parents agreed to, and what they, therefore, expected at age 18.
 
The interpretation of an open donor is left to each different facility, or to the whim of young men, many who donate while in college and who are never properly educated or counseled about the numbers or the needs of the children they helped to create, the reasons that their biological children might desire contact, or about the likelihood that they won’t be able to stay anonymous for 18 years.

  • We know of donors who tried to change from anonymous to open, but couldn’t. 
  • We know about donors who were sold as open but don’t respond to contact requests. 
  • We also know about open donors who refuse contact. Donors with 50, 100, or 200+ offspring can feel completely overwhelmed and not have the family support, emotional bandwidth, or capability to connect with that many kids, as many of them were promised and expected no more than 10 or 20. Additionally, many sperm donors feel embarrassed or ashamed about their history of sperm donation and therefore feel very strongly about keeping it a secret.
  • We have thousands of donors on the Donor Sibling Registry who either chose anonymity or who weren't given a choice. We’ve found that when donors are properly educated about the needs and desires of DCP and given the opportunity to connect, many are then very open to establishing relationships with their biological children who are both over and under the age of 18.

From a California Cryobank DCP:
...the donor refuses to meet, talk or provide any photos, even though he was a "yes" donor. 
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 have not been considered when setting policy. We believe they should not only have a seat at the policy table but should also be listened to first and foremost.
  
Every single vial of sperm sold in the US and Denmark is sold as anonymous, be it for 18 years or forever.  Because the large US and Danish sperm banks ship to more than 50-60 countries, local laws (eg., in the UK, Canada, and Australia) regarding anonymity or limits on offspring are meaningless.
 
The reproductive medicine industry needs to acknowledge that maintaining donor anonymity for 18 years is not possible, and hasn't been since 2005.  If a person is thinking about selling their gametes and wishes to remain anonymous for 18 years or longer, they just shouldn’t donate.
 
Since 2000, the Donor Sibling Registry has been facilitating mutual consent contact between many thousands of donor-conceived people and their half-siblings and/or their biological parents. For many medical and psycho-social reasons, contact long before the age of 18 can be both crucial and beneficial for all stakeholders: the parents, the donors, the donor’s family, and most importantly, for the DCP.
 
So why continue to try and force families and donors to wait 18 years, or even refuse to connect donors with DCP after they’re 18? 
 
It’s a financial thing:
  1. Keeping and updating records costs money. Sperm banks do not have accurate records on how many children are born for any one donor.
  2. Maintaining promises of updating and sharing medical information is costly and might result in lawsuits. 
  3. Keeping promises of limits on numbers of offspring would be costly as selling less vials of a single donor would also affect their net profit.
 
Mandating 18 years of anonymity serves the best interests of the sperm banks and fertility clinics. They've too often tried to scare parents and donors into believing that this mandate is in their best interests by telling them nonsense about custody battles  (there have been none that include a sperm bank or egg clinic donor), non-existent donor legal rights and responsibilities, and non-existent anonymity "laws" and FDA “anonymity mandates”
 
The sperm banks don't want the donors to know that they have 50, 100, or even more than 200 kids when they were promised no more than 10, 20, or 25 kids or families. DCP in these large groups who desire contact with their biological father may never get it, just because a sperm bank was careless and there is now an unmanageable number of offspring from a single donor.
 
84% of 164 surveyed sperm donors were never contacted by the sperm bank for a medical update (most sperm banks promise families yearly updates) while 23% indicated that they or a family member did have a medical issue that would be important to share. Not updating or sharing medical information decreases the sperm bank’s liability as medical issues can be ignored instead of shared.  ⁠But, without medical updates, and if a donor-conceived person doesn't know all of their half-siblings or their unknown biological parent, they could be missing out on sharing information about a physiological or psychological genetic issue that would warrant proper screenings, monitoring, or preventative medicine.
 
From A California Cryobank Donor:
For anybody that was looking for health updates or genealogy information for their children, I apologize for not posting to the registry sooner. I naively assumed that CCB would have requested updates or actually informed me of any offspring that tried to reach me after turning 18. My experience with CCB is very similar to what is reported on your website. I remember being explicit that I wanted to be available if any offspring wanted to contact me. Yet they had me listed as anonymous. And I also remember them assuring me that only 5-10 families would be sold to.

From Three Fairfax Parents:
My son has 220 known 1/2 siblings...our donor donated for at least 6-7 years!! The sperm banks make their own guidelines....and self police. It is not a regulated industry!
***
 
We purchased from Fairfax in 2008 and they told us that there had been “2 live births” from the donor. Turns out Fairfax was aware of over 50 known at that time!! Fairfax lies!! But, it is our “normal” and a battle our kids may choose to fight when they become adults.
***
 
Fairfax lies a lot. They told me 10 families. My kids have almost 200 half siblings.
 
From a Xytex Parent:
I used Xytex and my daughter has 100+ siblings which is a disgrace. I'm planning to write (another) complaint letter to the Fertility Society of Australia with details about the sperm banks that Australian clinics are using, and how they can justify using these banks when scenarios like this are happening and staff are admitting there are actually no limits.
 
From a Fairfax Parent:
I have recently found out that the sperm bank I used may have misrepresented themselves to me, and told me the donor agreed to be identified . They are now telling me (8 yrs later) that the donor is a NO donor not an identity release donor. Has anyone ever run into this before?? Any ideas on how to handle this??
 
From a Donor:
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. I only know that because a family that came after that insisted on contact. She showed me all of the info she had gotten on me. Those updates were not included. Any of the updates I have done since have not been passed on to her either.
 
From a California Cryobank Parent:
I will almost guarantee you that CCB never attempted to contact your donor. We've had several kids attempt contact through them and our donor reports that he never received any correspondence from them. And his contact info is all up to date.

From A California Cryobank Donor:
As an ID Release Donor my adult offspring should be able to contact California Cryobank, say “Hey, # XYZW was my donor. Please give me his contact information.” Every time I have moved or changed phone numbers or email addresses I have dutifully updated California Cryobank. So I asked one of my 20 year old kids (who I met through the DSR 7 years ago) to test the sperm bank. He called them, and was transferred to voicemail. I figured nobody would call him back, but lo and behold they did call him today. They asked him a bunch of questions to prove his and his mother’s identity, then told him I was an anonymous donor (Lie) and they didn’t have my contact information (Lie) but they would try to get in touch with me.

From Several California Cryobank Parents:
.. if the sperm bank [CCB]  can't find the donor 3 years down the road when my sons were speech delayed or 6 years down the road when my son had cancer, why do they claim they can find him after 18 years??
-
--
My CCB donor was also a yes (open) donor and now is a no donor. I am happy to say that we have four beautiful matches on the DSR. 2 girls and 2 boys. I don't know what the future has in store for us but I am happy to have the siblings we have now. 
---

I had something like that happen to my donor. Also, at CCB. It occurred after he was asked to reactivate for a couple. He obliged but then he changed to no. Ironically, that's when I discovered this registry and recently discovered that there are 3 half siblings. I've made limited contact with one parent of a sibling at Christmas time.
--

I have the same issue with CCB. When we were first looking at donors, we decided that we would like to use someone who was, at least, open to the idea of possibly being identified when my son turns 18. All of the information that I originally downloaded/printed said the donor was willing to be id'd when the children are 18...NOW, when I look at the information - even though the donor is retired - it shows him as a NO!
--
From A California Cryobank Donor:
I was a donor at California Cryobank who was open to contact and still every time a biological child of mine has reached out they have put up roadblocks.


From a California Cryobank DCP:
My moms used CCB as well and the narrative they/we were given was also that I could reach out when I was 18. Well I did when I was about 21/22 and played phone tag with some sort of client relations person who never ended up getting back to me. ...didn't need her to anyway, because we found my donor through Ancestry DNA..


 
 
From Two Parents (different donors) who used Pacific Reproductive Services (PRS):
My son is 19 and last year contacted PRS to begin the process of contacting his “willing to be known” donor. PRS told my son his donor was anonymous and he couldn’t contact him. I had all my paperwork that clearly stated otherwise. Upon further investigation, PRS told us the donor had changed his status from “willing to be known” to “anonymous” one month after I conceived.
--
Through your website, we have made contact with many families who used our donor. Our daughter will be 18 next year and was looking forward to getting more information about the donor at that time. We understand from one of the other families that the donor wishes to change his status to anonymous and has refused contact. We were also told that the sperm bank’s attorneys are preparing a letter to send to us. Needless to say, we’re terribly disappointed and haven’t figured out how to break it to our child.

A PRS Parent received this explanation from PRS:
About “Willing to be Known” Donors: Most of our donors are willing to be known to the children conceived as a result of artificial insemination with their donated semen when the child has reached the legal age of consent (18 years old in the state of California). The child must contact PRS to initiate the disclosure of the donor’s identity. PRS will attempt to arrange a meeting between the donor and the child. If PRS is unable to arrange such a meeting, the donor’s identifying information will be released to the child to enable the child to pursue this process on his/her own. The child will sign a contract specifically requesting that s/he respect the donor’s privacy in pursuing a meeting (i.e., not discussing the purpose of the meeting with anyone except the donor himself). Once a meeting has occurred, the donor’s obligation has been fulfilled. Pacific Reproductive Services cannot guarantee that the meeting between the donor and the child will occur. PRS must rely solely upon the donor’s representation and signed contract that he is willing to be known.

From a PRS DCP:
I am joining to search for any siblings I have. My clinic, PRS, has been extremely unhelpful in my efforts to make contact with my donor, and have even sent hateful words to me via email when I have requested help. I'm hoping this can be a different experience.

From a PRS Parent:
All us moms were given different numbers. They shipped his sperm to other places which he wasn’t aware of either.

From a California Cryobank Donor:
I am a donor who, through the DSR, started meeting my bio offspring (23 of them so far) 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.

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. They said that was it, but we know of families all over Europe. 

From the Director of European Sperm Bank (Seattle Sperm Bank):
After presenting research at the ESHRE meeting in Vienna in 2019, Seattle Sperm Bank director Greg poked his head into a conversation I was having in front of his booth to add, “The FDA mandates anonymity!” No, they do not. The FDA only mandates testing donors for communicable diseases and a small handful of other diseases.  As a result, some sperm banks test some donors for diseases like Thalassemia and Tay Sachs. No one mandates anonymity except the sperm banks and egg clinics. This sperm bank director’s misinformation about the FDA’s rules might be the reason for such a low sperm donor presence on the DSR’s Seattle Sperm Bank list.

From the VP of Communications California Cryobank (CCB):
NBC News, 2019: Scott Brown said, “Family is what we are in the business of, not genetic connection.”
 
Several years ago I asked California Cryobank about their open donor policy, and was told that when a child of 18 requested contact, the donors were sent a letter only asking them to “update” their information, not mentioning anything about a child desiring contact. So, if a donor read the letter and thought “I have nothing to update” he’d likely just toss the letter. He would never know a child desired to meet him, and the child would think that the donor refused contact. So I asked CCB: “Your rep said that when there is a request, donors are sent a letter to ‘update’ their file. They are not actually notified that a child actually wants to meet them. Is this true? This could explain the low response rate, as the donors are not made aware that a child is actually wanting to meet them.”
The reply I received back from CCB:
Our system is set up to protect the interests of all parties. We contact the donors via mail and/or email. If he chooses to respond, we explain the situation and ask if he is interested in moving forward with the contact. To send a letter with information about an offspring out of the blue could be very jarring, irresponsible, and could ultimately illicit an even lower response rate from the donors who do not understand the specifics of the interaction. We don’t phone them until they give us the ok, because if they have a wife or children who could answer the phone, it could put them in an awkward position.

From a Parent:
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 Two California Cryobank Parents:
I did look at the CCB website last night [2019] to check. They still sell Anonymous, Open and ID Release. Having paid premium pricing for Open (willing to be known) I looked at their new conditions with the third category. I was horrified to discover that the first statement on Open Donors is that it specifically excludes learning the identity of the donor. Not what I had in mind at all. ID Release gives the donor’s identifying details to the 18+ on request. However, amongst other conditions, they now require the DC person to sign a non-disclosure agreement specifically forbidding them to tell their siblings. Otherwise they will refuse to deliver the ID the parents paid for. These conditions and unilateral changes probably would not stand up to challenge under contract law but have not been tested yet.
---

My oldest daughter reached out to CCB last spring when she turned 18, requesting contact with the donor. After a few days, Latrice Allen emailed my daughter and told her that they "know his whereabouts" and will reach out to him, but not to expect contact because he has the right to say No. She said they would attempt to contact him 3 times. My daughter never heard back.
 
From a DCP:
I don't think donor anonymity is an issue that is front of mind for the general public. It's individual fertility specialists and clinics seeking to retain control and living out their antediluvian paternalistic attitudes in practice that are the reasons behind the persistence of donor anonymity. They don't trust the lived experience of donors, donor-conceived people, or the parents of donor-conceived people and believe that in call cases "doctor knows best". When you have a combination of capitalism and patriarchy you're going to have problems with getting progressive values into place.
 
 

From a Donor:  
My DC offspring may wait until they are 18 to contact me. In that time, they have lost out on meeting their biological great grandparents and may miss out on their biological grandparents too. What if I wasn't still alive when they hit 18, and they could have known some family, but that time was lost too.  These children have every right to track down and have the chance to know family before family may be gone. You can not undo time because you waited too late. Time is precious.
 
From a Parent:
By the time we found my son’s donor we learned he died suddenly 2 years prior. We did find his sister though, and she is a loving aunt figure to the 26 siblings.