Doctor blames profit motive for sperm-donor diseases

The Journal of the American Medical Association (JAMA) recently highlighted the case of a sperm donor who had 24 children, nine of whom became sick with an inherited heart condition. One child, 2, died.

Dr. Kirk M. Maxey is chairman of the board of directors for the Donor Sibling Registry (DSR), a nonprofit organization that serves donor-conceived individuals and families. Dr. Maxey is also a former sperm donor who has met two of his biological daughters, and founder of Cayman Biomedical Research Institute, a nonprofit organization that offers genetic testing.

In a detailed response to the JAMA article on the DSR Blog, Dr. Maxey said there are many cases of inherited genetic disease in donor-conceived children, and reform is needed. Washington Times staff writer Cheryl Wetzstein recently spoke with Dr. Maxey.

Q: Why did you write a response to the JAMA article? A: I wrote the letter because … the authors of the article said, “Wow,

this is so amazing; we have found a sperm donor who had a congenital heart disease and he passed it on to nine children, including one who died. And isn’t that remarkable because we’ve never heard this before.”

So I was responding, saying, “First of all, you guys are pretty dense because … there’s multiple published reports of donors passing bad things to children. And second of all, this is a good reminder to everyone that we should open up and eliminate anonymity in donor gamete collection. And we should stop the profit system - for-profit sperm banks - because that’s basically what drives this.”

Q: What is your interest in this issue?

A: I am a former donor and I have a vested interest in trying to see that there is some reform of this particular branch of medical living-tissue donation.

If you step back and you say, “From time to time, patients need living medical tissue,” everyone says, “Yes, that’s true - kidneys, hearts, lungs.” OK, everybody gets that.

And then you say, “And let’s take one branch and completely cover it in secrecy, with no open records, no ability to find out who did what, and let’s make the people running that system really rich.” And then everyone’s eyebrows would just hit the ceiling and say, “Why would you ever do that?”

But that is actually the case [with sperm banks]. Blood products and other tissues are handled in this sort of calm, boring, nonprofit manner, and then gamete (reproductive tissue) is handled in this other way - Wild West, crazy, no one knows what anyone is doing. And I find that just so inappropriate from a public-health standpoint.

Q: Just a ballpark figure - how much are the men paid for their sperm, and how much do women pay to get it?

A: [In the 1980s], I was paid $20. Donors now get closer to $80 to $100 for a donation. And my biological daughters’ mom was charged $1,500 for the first one and $2,000 for the second one. So I didn’t get a very big cut of the gate, if that’s what you are asking.

Q: I think most Americans really have no idea of the profit markup on these particular exchanges.

A: One-hundred fold.

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