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