New York Proposes Donor-Conceived Person Protection Act
If passed, it would add into state law a duty for reproductive tissue banks to collect and verify medical, educational, and criminal background information for all donors.
On December 15, 2021, New York State Senator Patrick Gallivan introduced a “Donor-Conceived Person Protection Act.” The act is designed to protect couples and individuals who receive donated sperm, eggs, and other genetic material, so that they know more about the history and genetic makeup of the donor. If passed, it would add into state law a duty for reproductive tissue banks (like sperm banks, as well as facilities working with donated eggs and embryos) to collect and verify medical, educational, and criminal background information for all donors.
Required disclosures from donors. We don’t know whether it will become law yet, but the act would require all sperm, egg, and embryo donors to complete a state-issued standardized form, and provide the following information:
- All diagnosed medical conditions. Including, but not limited to, any genetic disorders, infectious diseases, mental disabilities, and serious medical conditions.
- All serious family medical conditions. To the extent the donor has knowledge of or should have knowledge of such conditions, within the third degree of consanguinity. I actually had to look this one up, just to make sure that I knew what they meant by “third degree of consanguinity.” A first degree relative is your spouse and children. Second degree is siblings and half-siblings, grandchildren, and grandparents. Third degree is your aunts, uncles, nieces, nephews, grandparents, and grandchildren. Phew. That’s a lot.
- All medical professionals seen in past five years. The names of any medical professionals seen by the donor within the preceding five years from the date of donation. As someone who can barely remember the name of my Primary Care Provider, this one seems especially challenging.
- All school names. The names of any secondary, postsecondary, and graduate schools attended.
- All criminal felony convictions.
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Under the bill, the donor would also be required to provide written consent authorizing the reproductive tissue bank to obtain all medical records held by such medical professionals, enrollment and graduate records, and any criminal felony conviction records. The tissue bank is then required to verify the medical, educational, and criminal felony conviction information provided by the donor.
Once collected, the reproductive tissue bank would have to give all the information to the recipients of the donated tissue, as well as any resulting donor- conceived person (i.e., the kid) if they are 18 years or older, or earlier, if the recipients agree for their child to receive the records sooner.
Would it eliminate anonymity? Not quite, but just barely. The bill provides that except in the case of a known donor, the reproductive tissue bank will need to redact from the donor’s records any personal identifying information. Still, in today’s world, having a lot of information makes identifying anyone somewhat simple.
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Could New Yorkers just use sperm from out-of-state banks? Nice try, but no. The bill would also prohibit the use of any donor reproductive tissue from a bank outside of New York from being used in an artificial insemination or assisted reproductive technology procedure, unless and until the bank certifies that it has complied with all the requirements of the Donor-Conceived Person Protection Act.
Pros. This Wall Street Journal article tells the story of Laura and David Gunner, and the loss of their donor-conceived son Steven to an overdose. Steven suffered from schizophrenia and struggled with addiction and erratic behavior for over a decade. After his death, the Gunners learned that the sperm donor they had used had also suffered from schizophrenia, and had also himself died of an overdose. Schizophrenia can run in families and the Gunners believe that the donor’s genetics likely contributed to Steven’s condition.
The Gunners wanted to do something to spare others from their same fate. Their story inspired Sen. Gallivan to introduce the “donor-conceived person protection act.”
The Gunners are not alone in their experience. A number of lawsuits have come to light where recipients of donated reproductive material have had children suffering from a genetic condition passed down from the donor. One of the most striking of these stories is that of Xytex Donor 9623. (Check out this podcast series on the shocking story.) Similar to the Gunners’ donor, Donor 9623 failed to disclose a background of mental health struggles. He also affirmatively lied to the sperm bank about his educational background, claiming to be working on a neuroscience Ph.D., but had, in reality, dropped out of his undergraduate studies. A number of the children conceived from Donor 9623’s sperm also suffered from mental health conditions.
Many recipients are surprised to learn that most banks do not verify the information provided by donors, but take them at their word. If a law like the proposed New York Donor-Conceived Person Protection Act had been in effect for Donor 9623’s situation or the Gunners’ donor — and if it had been followed — recipients would have had a lot more information to make an informed decision.
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Cons. I spoke with Dr. Betsy Cairo, who is the owner and director of Colorado Cryogam, a sperm bank in Colorado, which is also licensed under New York tissue bank regulations. Cairo described how invested she and other professionals are in helping people achieve their dreams of a family and their commitment to connecting them with good tissue. However, she thought the proposed law would have unintended negative effects. She explained that with the COVID-19 pandemic, the supply of donor sperm has experienced a significant drop. She suspects that the heavy burden imposed on a donor by the proposed law would cause an even further drop not to mention a significant increase in cost that would inevitably flow from an intensive verification process.
Aside from the increase in cost and the decrease in donors, Cairo was skeptical that the law would actually accomplish its goals. She explained that while a sperm or egg donor contributes half of the genetic code to a child, there is a whole other half to consider: generally, the half provided by the recipients. A recessive trait from a recipient parent could pop up even with the best donor screening methods.
A split. I reached out to two New York attorneys with practices focused on assisted reproductive technology for their thoughts on the bill. Joseph Williams of Copps DiPaola Silverman, PLLC, felt the cost element was too much. “The cost for intended parents of pursuing assisted reproduction is already extremely high, and these requirements are sure to cause the cost of gamete and embryo donation to skyrocket.” As a result it will make assisted reproduction impossible for some families.
Rachel Wexler of my own firm, Trachman Law Center, LLC, had a different take. While she agreed that parts of the bill seemed particularly cumbersome, she argued that the overall need for stronger protection of the rights of donor-conceived individuals and transparency regarding a donor’s medical history is urgent. “From my perspective, the proposed bill aims to implement regulatory standards that tissue banks should have been held accountable for a long time ago.”
Hopefully this proposed law, whether it passes or not, will raise awareness of some of the crucial issues facing donors, recipients, and donor-conceived persons.
Ed. note: An earlier version incorrectly stated that the proposed bill would require the law to go into effect nineteen (19) days after becoming law. The bill actually notes that the law would go into effect on the ninetieth (90) day after it shall have become law. The incorrect reference has been removed.
Ellen Trachman is the Managing Attorney of Trachman Law Center, LLC, a Denver-based law firm specializing in assisted reproductive technology law, and co-host of the podcast I Want To Put A Baby In You. You can reach her at babies@abovethelaw.com.
