Unintended consequences of anonymous sperm donationNovember 21, 2011Carole 4 Comments »
Every week, we field questions about using sperm donors from patients who can’t have a child unless they can use donor sperm and most buy sperm from a commercial sperm bank. They may be a married couple in which the man does not produce sperm or had a vasectomy that he doesn’t want to reverse or perhaps was reversed unsuccessfully. It might be a fertile couple in which the male partner knows he has a genetic disease or chromosomal abnormality that he doesn’t want to pass on and preimplantation genetic diagnosis is not an option for them. It might be a single woman who doesn’t want to wait or can’t wait any longer for Mr Right to come along to have a child. They might be a lesbian couple. Whatever the need, ordering a vial of donor sperm is not uncommon and frankly, provides an immediate solution to a difficult problem.
If you go to any of the sperm bank websites, you can access information about hundreds of donors and buy sperm for your family tree with a few clicks of a mouse. Two of the largest and oldest commercial sperm banks, Xytex International and California Cryobank were incorporated in the US in 1975 and 1977, respectively. Here’s a typical donor information page from Xytex that allows you to look at donor stats before you select the donor. You get lots of information about the donor such as height, weight, eye color, hair color, ethnicity, race, hairiness (yes really!) detached or attached ear lobes, etc. You also get some medical history background regarding the donor and his parents and grandparents but this history is self-reported and is not independently verified. The FDA requires that gamete donors undergo a battery of infectious disease risk factor screening and infectious disease testing before they are permitted to donate.
Until fairly recently, donors anonymity was protected and donors were guaranteed that no one would ever know their identity. That is slowly changing in the US. Some banks now show photos of the donor as a baby, child and adult to prospective recipients. These pictures can be purchased for the “family” album. Again, not kidding. Increasingly, donors are giving permission to be contacted by their donor-conceived kids when they turn 18.
What is behind this greater openness about the identity of sperm donors? A growing number of adult children who were conceived with donor sperm want to know more about their biological roots and are making their needs known. The Donor Sibling Registry is a website started by a donor-conceived son and his mother to help donor-conceived kids find their siblings by posting their donor number on the site and finding others who were conceived from the same donor.
While the choice to remain anonymous or not is completely up to the donor in the US, other countries are banning anonymity. In 2005, the UK passed laws that banned anonymous donation and allowed donor-conceived children to find the identity of their donor once they turned 18 years of age. The law was not retroactive but only applied to new donors. Donors donating after the ruling, although no longer anonymous, would still be immune from any legal, financial or social obligations to the child conceived from their donated gametes.
In May 2011, British Columbia joined the UK, other European countries and the state of Victoria in Australia in banning anonymous gamete donation. Germany, likewise, forbids anonymous sperm donation. Italy goes even further, entirely banning the use of donor gametes, regardless of openness. Interestingly, in Spain, where anonymous sperm donation is allowed, the choice of donor for a recipient is made not by the recipient but by her medical provider!- a practice that would be unacceptable in the US. The wide variation in reproductive laws in various parts of Europe has resulted in another unintended consequence- medical tourism- in which patients seeking anonymous donors will go to countries which permit anonymity to be inseminated or have IVF.
Anonymity of donations may have another unintended consequence – overuse of some popular and fertile donors. The existing sperm donor system in the US, unlike Europe, Canada and Australia, is not regulated by federal law, but is subject only to voluntary guidelines published by the American Society for Reproductive Medicine. ASRM guidelines recommend that sperm donors remain anonymous and that each sperm donor be limited to 25 births per population of 800,000 people. However, ASRM has also reported that most births are not reported to sperm banks so that voluntary donor limits can easily be exceeded. When the vial of sperm arrives in the clinic, it is accompanied by a feedback form that should be sent back to the sperm bank by either the lab, the physician office or the recipient when the outcome of the insemination is known. However, many times, if not most times, this form is not sent back because the initial positive pregnancy result is not known for two weeks and the final live birth outcome is not know for up to 9 months. If there is no penalty for not reporting and no incentive to make the effort in today’s already over-burdened health care system, it should not surprise anyone that these forms are lost, forgotten or even discarded upon arrival because it is no one’s job to report the outcomes. How many kids could this affect? No one knows because births are not tracked very well but estimates range from approximately 30,000 to 60,000 sperm donor births a year.
On Sept 6, 2011, the New York Times published an article called “One Sperm donor, 150 offspring” which highlighted the inevitable result of weak to non-existent reporting of donor outcomes and the use of anonymous fertile donors. Using the Sibling Donor registry, one family found that their donor-conceived child had 150 half-siblings, exceeding ASRM guidelines 6-fold. These guidelines were developed to reduce the probability of accidental consanguinity (incest) of related siblings from anonymous donors and also to prevent the spread of rare disease genes through the population.
The effect of unlimited conception on donors can also be negative; some report feeling betrayed by the sperm banks who told them initially that 5 kids per donor was typical and are then shocked to see that they have fathered many more children then they are comfortable with. According to the New York times article, one donor keeps track of his 70 offspring using a spreadsheet. What does family mean in that scenario? What rights do donor-conceived children have? When do their rights trump the rights of donors and their recipients who made the anonymity bargain before the children even existed?
Anonymity also carries potential medical risks to the children when they are ignorant of the evolving medical family history of their donors. One recent case of the unintended consequences of anonymity involved a rare aortic defect that was passed on to 9 of 24 children conceived from sperm from the same donor. The donor, who donated sperm in his twenties, did not become aware of his cardiac condition until it almost killed him in his forties. Offspring of that donor were offered genetic testing to see if they inherited genetic mutation that caused the heart defect. One of the nine children who inherited the gene died as a toddler. Two other children, teenagers now, have lingering medical problems and are, like their donor, at risk of sudden cardiac death.
Because neither recipients nor donors can predict what medical or personal information needs a donor-conceived children may have in the future, it seems that at the very least, we should choose donors who are willing to open that door to the child when they reach adulthood.
© 2011 – 2013, Carole. All rights reserved.