By admin on October 28, 2021

How does answering to private equity owners and lobbying in the world of gamete donation encourage a responsible and ethical industry? 

What’s the issue with private equity firms owning the gamete brokers: the sperm banks or egg clinics/banks?  When the main focus is profit, all too often these gamete brokers can be deceptive, both by the omission of important information they supply to all stakeholders and by blatantly lying.*   At the same time, many practitioners in the reproductive medicine field look to the American Society of Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technologies (SART) to set policy and keep an ethical eye on the industry. Infertile families look to Resolve to give accurate and important information about infertility, including information about creating a family with sperm or egg donation.  What's the problem with these 501(c)3 organizations lobbying when they are supposedly focused on educating medical professionals and the public about reproductive medicine and donor conception? When it comes to donor conception, we need to look more closely at what these entities are actually lobbying for and against. Are they deliberately lobbying against making the industry more ethical and responsible for those who sell (sperm and egg donors), those who buy (parents), and for those who are created from these brokered gametes because it would be more costly to the gamete brokers (the sperm banks and egg clinics/banks)?

When private equity firms either dictate or directly influence reproductive healthcare policy, and if the main goal is profit, then best practice and adequate education and care for the parents/patients, sperm/egg sellers, and for the donor-conceived people is pushed off of the agenda. A California Cryobank representative told me that they can’t establish the policies that would better educate parents and donors and better serve donor-conceived people because it would cut into their profits and because they are now owned by a private equity firm, profit is their main concern. (I should note that it sure looked like profit was their main concern even before they were bought by GI Partners as they had decades to implement more responsible and ethical policies.) The ASRM, in their 2021-2025 Strategic Plan Development, acknowledges the potential for negative consequences with private equity funding, "There is a risk that private equity acquisitions of medical practices will ramp up, leading to some negative consequences for physicians (particularly younger ones) and lower quality care for patients. Very hard to know how to prevent the negative consequences." But they offer no guidance or recommendations.

The ASRM's Strategic Plan for 2021-2025 also states that they want to "Increase federal and state lobbying regarding reproductive health and reproductive care critical to the diverse populations of patients and the providers who deliver their care." But they have made sure, via their lack of acknowledgment and recommendations, and via years of lobbying, that issues like mandating accurate record-keeping and tracking/limiting the numbers of children born to any one donor don’t become regulated. Resolve, the organization that claims to support infertile families by "empowering them with knowledge" and who also spends thousands each year on lobbying, has a dearth of information about the children that everyone is working so hard to create, along with many other crucial issues that affect all stakeholders in the donor family.

You would think that people in the reproductive medicine industry would understand the importance of these things as they relate to the health and well-being of all donors, parents, and donor-conceived people, and not actively lobby to keep the industry from becoming more responsible, ethical, and safe. If large amounts of industry lobbying money can go to protect the reproductive rights of parents, why is there no money allocated to lobbying for the rights of the resulting donor-conceived people? The disconnect is staggering.

For the most part, the ASRM ignores the Donor Sibling Registry and the importance of our work, research, and the more than 21,300 donor-conceived people and donors that we've connected. But sometimes they just can’t help themselves. Dr. Robert Brzyski, a former chairman of the ethics committee at the ASRM publicly questioned my reporting of half-sibling groups over 100, calling it a “stretch”. At the time I had good reason to believe that he was very aware of these large groups of half-siblings. I then went to the NY Times. (This group and other half-sibling groups are now well over 200 even though many of the parents and donors were promised no more than 10 or 20). Dr. Adamson, who was at the time president of the ASRM (and a former Resolve board member) said to me, “Registries can be discriminating...a lot of traditionally conceived children don’t know their parentage, so why should gamete donor children?” Sean Tipton, the ASRM lobbyist once said, “I don’t draw any conclusions from the Donor Sibling Registry. I don’t know if there is any counterpart organization for happy children of sperm donors.” These comments not only show the ASRM's resistance to acknowledge the importance of educating, connecting, and supporting donor families, but also the ignorance of ASRM leaders, the folks that the entire reproductive medicine industry looks to for guidance. 

* I get it: how many sperm donors would there be if they were told that they might end up with 100 or more than 200 biological children that could easily find them via DNA testing?
Or, how many parents would buy gametes from a place that doesn't update their donor's medical health record or share important medical and genetic information among families?
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. “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.”

In 2009 97.4% of 155 surveyed egg donors were never contacted by their clinic for a medical update while 34.2% said they had a medical issue that would be important to share.

In 2021, still, 94.3% of our 345 surveyed egg donors reported that they had never been contacted for a medical update while 25% had medical issues they felt were important to share with families.

A donor-conceived person [Fairfax Cryobank] reported yesterday: 

The mothers [in our half-sibling group] received a letter in 2003 notifying them that the sale of our donor’s sperm was ceased due to a genetic mutation in an offspring. As of October 2021, there are approximately 72 siblings that we were able to locate and at least five of my donor siblings were born in the years 2005-2014. If the sale of this defective sperm was halted in 2003, that must mean they either purchased it prior to 2003, or they are donor siblings in the same family using the same donor, right? Well, you’d be WRONG. I check his donor profile quite often, actually. And, as of February of 2021, earlier this year, I happened to be on his profile [on the Fairfax Cryobank website] and I WAS ABLE TO ADD A VIAL OF HIS SPERM TO MY CART AND PROCEED TO CHECK OUT. 

By admin on October 25, 2021
My speaking experience last week at the ASRM's annual meeting was bizarre. The panel discussion was called "Open-Identity Sperm Donation: What Are the Children Saying?" Despite my early insistence that the panel actually invite donor-conceived people (DCP), no DCP were invited.* My fellow panelists seemed perturbed at my suggestion/reasoning and told me that DCP might be a part of a future talk, but not at this one that actually asks "what are the children saying".

Speaker #1, the owner of Seattle Sperm Bank talked about his sperm bank. He never mentioned identity release/open donation or anything about how it's working for donor-conceived people (DCP).

Speaker #2 an egg clinic director, presented information about an informal survey she took of her own egg clinic's parents. Again, nothing about open donation or DCP.

Speaker #3, a geneticist, talked about genetic testing. Again, nothing about open donation or DCP.

I then gave my presentation called The Ambiguity of Open Gamete Donation, citing why, in a significant number of instances, identity release/open donation is not working for DCP, and then questioned the ethics of "open" donation: deliberately keeping a donor child from their close genetic relatives, ancestry, and medical information for 18 years.

Given the title of the talk, it was bizarre that none of the "experts" wanted to talk about open donation and donor-conceived people. I am guessing that was because the other 3 panelists had limited understanding, contact, or experience with actual DCP. This has been my life's work for more than 2 decades, I have co-authored 26 papers in peer-reviewed journals, have talked with thousands of DCP and their families, have facilitated contact between more than 22,000 DCP and their close genetic relatives, and raised a donor child. So while I am not donor-conceived, I am very aware of their experiences and feelings. I had my white paper printed into booklets to hand out. While all vendors were handing out their goods in the exhibition hall, and books and merchandise were passed around a roundtable discussion I attended earlier that day, Sean Tipton of the ASRM publically reprimanded me for distributing my white paper called The Ambiguity of Open Gamete Donation, which has 33 pages of important qualitative (the voices of DCP, parents, and donors), and quantitative data (stats from research studies) to back-up my talk. 

The exhibition hall was filled with many sperm and egg vendors: the cryobanks and egg/embryo clinics/agencies, but there was no mention of the people they were all so focused on creating (except as babies) and the genetic connection between those people and the gamete sellers (the donors). 

And great resistance to talking about or acknowledging them at all.

Comments from Donor-Conceived People:

If the title of the session is "Open-Identity Sperm Donation: What Are the Children Saying?", then why isn't there an actual DCP person on the panel? Instead of, for example, a sperm bank director who has financial incentive to keep donors anonymous?  Why not DCP people who have experiences with the failings and successes of open donation? Shouldn't the children themselves answer the question about how they're doing?

I am perplexed. Why are 3 out of 4 of the panelists giving perspectives other than an offspring's perspective? Isn't this panel supposed to be looking into how the children feel and think about open or anonymous donation? The title should be:  Open-Identity Sperm Donation: What are the sperm banks, genetic counselors, and parents saying?

I am frankly slack-jawed in amazement, disappointment, and disbelief. So far still to go sadly.

The CONTINUED lack of input from donor-conceived people is enough to give me conniption fits! Thank you, Wendy, for your attendance. I'm sure you'll give them plenty to think about.

From Parents:

It sounds to me like the people in the industry are presenting justification for continuing as they are… withholding information from dcp for 18 years. Thank you Wendy for standing up for our children’s rights time and time again.

Sadly, it’s too often that representative panels are hardly that. Like the male majority panels who speak to topics of women’s health.

*A few days before the conference the ASRM did buckle and allow DCP to send in a single video for participants to watch on the ASRM website.

By admin on October 25, 2021
On November 3, 2005, an article came out in New Scientist Magazine about a donor-conceived 15-year-old (my son) who located his donor/biological father via a commercial DNA test. He was the first to do this. Two weeks later the Washington Post also covered the story. It's stunning that all these years later, and with thousands now having done the same, every single vial of sperm and all eggs are still sold as anonymous, either for 18 years or forever. 

Donor anonymity ended in 2005, but when will the sperm band egg vendors (yes, vendors, as they buy and then re-sell the gametes) acknowledge this and stop selling all gametes as anonymous? 

  • When will they acknowledge that these connections can be important to the donors and to the donor-conceived people, many of whom are younger than 18?  
  • When will they acknowledge that while there are many ways to make a family, that a very common way that all humans define family is those with whom you share a significant amount of genes?  
  • When will they acknowledge that knowing about one's ancestry and family medical history can be crucial to a person who is both under and over the age of 18? 

The sperm banks, egg clinics, and the American Society of Reproductive Medicine as a whole act like this is something "new" and that they haven't had time to review the situation. I think 16 years is ample time to educate themselves on the situation and adjust accordingly.

In no other segment of society is it accepted practice to keep a person from their close genetic relatives (biological parents, grandparents, and half-siblings) for 18 or more years. 

The practice is archaic and harmful. Stop putting profits before ethics when it comes to creating human life.

We invite all stakeholders and the reproductive medicine industry to read the published research.