I've always been aware of this concept in regards to running businesses and organizations, including the Donor Sibling Registry. Our organization (and its website) has continued to grow and evolve over the past 21 years. At times this has been extremely challenging, and even painful, but nevertheless crucial in order to continue serving the needs of all those in the donor family.
"The high price of doing nothing" was highlighted in the news yesterday, and it got me thinking about the cost of doing nothing to repair the broken parts of the sperm and egg selling industry. In too many areas, that industry has done very little to reflect the honesty, openness, and transparency that donor families have been requesting for decades. We regularly hear about children's health issues that never should have happened and medical information that was never shared. Donors report trying to juggle more than 50 or 100 offspring and too many donor-conceived people are crushed when their "open" donors turn out to be not so open. Donor families have paid the price, over and over and over again. While there may be a huge financial cost to adequately address and repair some of these issues, the negative toll that these unaddressed matters have taken on donor family members is immeasurable.
A few to ponder:
"The high price of doing nothing" was highlighted in the news yesterday, and it got me thinking about the cost of doing nothing to repair the broken parts of the sperm and egg selling industry. In too many areas, that industry has done very little to reflect the honesty, openness, and transparency that donor families have been requesting for decades. We regularly hear about children's health issues that never should have happened and medical information that was never shared. Donors report trying to juggle more than 50 or 100 offspring and too many donor-conceived people are crushed when their "open" donors turn out to be not so open. Donor families have paid the price, over and over and over again. While there may be a huge financial cost to adequately address and repair some of these issues, the negative toll that these unaddressed matters have taken on donor family members is immeasurable.
A few to ponder:
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The lack of adequate counseling and educating of parents and donors before donating/purchasing gametes.
Parents and donors are not making fully informed choices/decisions that affect them (and their children) for decades to come.
62% of 1700 sperm recipients had no pre-insemination counseling.
80% of 164 surveyed sperm donors said they were not counseled or educated about offspring curiosity.
62.6% of 363 surveyed egg donors reported not receiving counseling on potential future fertility issues.
This would be costly as if donors were adequately and honestly counseled and educated, many would not donate.
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The lack of comprehensive medical/genetic testing of donors.
The FDA only mandates testing for communicable diseases (STDs) and a small handful of other diseases, (which have all been reported by DSR families).
Thousands of medical issues have been reported to the DSR, too many that could have been avoided.
74% of 485 donor-conceived people who wish to make contact with their donors list learning more about their medical backgrounds as a reason for the desired contact.
Full and adequate genetic testing of donors would be costly and many donors would not be accepted.
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Sperm banks/egg facilities not updating and then sharing medical information between donors and families.
Many sperm banks and egg clinics claim to ask their donors for yearly medical updates.
Earlier research reports that 85% of 164 sperm donors and 97% of 155 egg donors have never been contacted by their clinic/sperm bank for a medical update, while 23% of the sperm donors and 31% of the egg donors felt that they, or a close family member, had medical/genetic issues that would be important to share with families.
2021 surveys of 345 egg donors showed that 94.3% were never contacted for a medical update while 25% indicated that they did have a medical issue that would be important to share with families.
74% of 485 donor-conceived people who wish to make contact with their donors list learning more about their medical backgrounds as a reason for the desired contact.
It would be expensive to contact donors regularly for medical updates and then share that information with the families that purchased the gametes.
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Selling all gametes as “anonymous”, for 18 years or forever.
DNA= Donors Not Anonymous. It has not been possible for donors to remain anonymous for more than 16 years.
73% of surveyed donor-conceived people answered “yes” to “if your donor is anonymous, do you wish that your parents would have used a known or willing-to-be-known donor?"
While it is time-consuming and costly to mandate/promise/enforce anonymity (impossible) and then try finding "open" donors 18 years after donation, (sometimes impossible) it might be more costly to abandon selling the idea of anonymity as that might result in fewer donors. Additionally, more money would need to be spent on adequately educating donors and parents about anonymity no longer possible, and what that means for their families.
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Lack of accurate record-keeping on the children born to any single donor.
There are no accurate records of the children born to any single donor, not by sperm banks or egg facilities.
42% of 108 surveyed egg donor parents were never asked to report their births.
45% of 1700 surveyed sperm donor recipients had no request by the sperm bank or clinic to report the birth of their child(ren). 31% of those say that the sperm bank is unaware of the birth of their child.
It would be costly to accurately track all the births to any single donor which might include mandating the reporting of births and would also entail figuring out how to track the 22%-28% of donors who donate to more than one facility.
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Limiting the number of children born to any single donor.
Half siblings groups over 100 and even over 200 are now not uncommon. These large half-siblings groups are challenging to all members of the donor family, for many reasons.
If donors knew that their donations might result in 50, 100, or 200+ kids, they might not donate. It would greatly impact a facility's revenue to sell less of any single donor's gametes.