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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.
- Where are the calls from the ASRM, SART, and from Resolve for properly educating and counseling parents and donors?
- Where is the call for sperm bank accountability in regards to people not receiving the sperm that they thought they bought?
- Where are the calls for/education about accurate record-keeping, to actually know how many and who was born from any one donor?
- Where are the calls for/education about not creating half-siblings groups of more than 100 or 200?
- Where are the calls for/education about the updating and sharing of medical information between these close genetic relatives?
- Where is the acknowledgment and education about the fact that donor “anonymity” can no longer be promised and that no gametes should therefore be sold as “anonymous”, not for 18 years or forever?
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.
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.