16 Nov 2020 Is Egg Donor Anonymity A Thing of the Past?
As growing numbers of babies born through the use of sperm and egg donation reach adulthood, a “donor conceived” movement, advocating for the right of donor-conceived people to know about their biological origins, has helped to make donor anonymity increasingly difficult to guarantee. Now, some U.S. states have passed laws that prioritize donor-conceived offspring’s right to know, a seismic shift in the legal landscape and a U.S. donor industry historically built on anonymity.
U.S. Egg Donor Industry Built on Tradition of Anonymity
U.S. egg donors traditionally have had an expectation of remaining anonymous, insulated from future contact by the offspring they conceive. Likewise, intended parents have found some comfort in remaining anonymous as well. But in the age of ancestry websites such as 23andMe, genetic disease screening and sibling registries, more and more oocyte (egg and sperm) banks and agencies are (rightly so) advising donors that their anonymity cannot be guaranteed.
When I began working in the ART field, egg donors (and sperm donors) could safely expect to remain anonymous—and they preferred it that way. Breach-of-privacy concerns were limited to accidental breaches, such as leaving a private paper out for prying eyes to see or an accidentally mailed document.
The world has changed since then…. Potential egg donors should take into consideration that anonymity is quickly becoming a thing of the past before making the commitment to become an egg donor.
As the use of sperm donation, egg donation and embryo donation have become increasingly common over the past decades, the children conceived using that technology have grown to adulthood, many of them yearning for information about their genetic origins. Organizations such as We Are Donor Conceived, and the Donor Sibling Registry, founded in 2016 and 2000, respectively, by donor-conceived individuals, offer resources, information and connection for thousands of siblings each year.
Globally, laws governing egg donation and other forms of assisted reproduction technology vary widely from country to country. Some Western nations historically have banned or tightly restricted access to assisted production. In France, for example, in order to be legal, egg donation must be both anonymous and uncompensated, i.e. the egg donor cannot be paid for undergoing the procedure. Elsewhere, such as in Spain and South Africa, egg donors may be compensated but by law must be non-anonymous.
The ‘Wild West’ of U.S. Reproductive Law
In the United States, laws and regulations vary widely from state to state on issues such as how legal parentage is established and who may legally participate in surrogacy and under what conditions. Likewise, there is no federal law and few state laws specifically regulating egg donation.
Egg, sperm and embryo banks, along with other types of organ and tissue donations, are regulated by the U.S. Food and Drug Administration (FDA), which requires a review of donor medical record and screening for communicable diseases. While the FDA requires banks to preserve certain donor information for medical purposes, it does not weigh in on donor anonymity or the rights of donor-conceived children to identify their donors.
Although the American Society for Reproductive Medicine (ASRM) monitors and provides guidelines for best practices in the egg and sperm donor industry, adherence is voluntary.
Secretive History of Egg and Sperm Donation
While “artificial insemination” has been used for centuries in animal husbandry, and donated sperm has been used in human reproduction since the 1800s, egg donation is a relatively new technology. Although sperm donation and artificial insemination were in wide use in the U.S. by the 1950s and ’60s, the first successful U.S. pregnancy and birth using an egg donor did not occur until February 1984, following Australia in 1983, as reported in The New York Times.
From the beginning, infertility and sperm donation carried a stigma, and the sperm donor and IVF industries evolved from a tradition of secrecy, concealment, and controversy, as we reported recently in “Is Sperm Donor Anonymity A Thing of the Past?”
Conventional wisdom held that donor anonymity was the best way to protect family reputation, and that concealment of genetic origins was in the best interest of the child.
Those attitudes began changing in the 1970s and 1980s. An adoption identity movement emerged in the U.S. and internationally in support of adopted children seeking information on their biological origins for health purposes. As fertility treatments for men improved, U.S. sperm banks found new markets in lesbians and single women, many of whom wanted to be open and transparent about their children’s genetic heritage.
New California Egg Donor Law Ends Anonymity
Several Western nations, including Austria, U.K., Sweden and New Zealand, have laws banning egg donor and sperm donor anonymity
In 2011, Washington became the first U.S. state to enact legislation limiting egg donor anonymity. The law guarantees that children who are conceived using gametes from a Washington egg bank or matching program will, upon turning 18, have access to their donors’ medical histories and full names—unless the donor has specifically opted out of being identified.
In October 2019, California legislators followed Washington’s path, with a law, effective in January 2020, that requires oocyte (egg and sperm) banks and donor programs to collect and retain a donor’s full name, date of birth and address, as well as any other contact information provided. The new law also requires the donor program to obtain a declaration stating whether the donor does or does not authorize disclosure of donor information to any resulting children when they reach age 18 and request the information.
In the absence of a declaration of donor anonymity—if an egg donor fails to complete a declaration or if the donor program can’t come up with the paperwork—the donor program must release donor information to the child upon request at age 18.
Even if the egg donor has a declaration of anonymity on file, the adult donor-conceived child still has one additional recourse. Once the child reaches age 18, the new California law requires the egg bank or donor program, upon request, to contact and offer the egg donor one more chance to disclose her identity.
How Will End of Donor Anonymity Impact Supply of Donor Eggs?
As the trend continues to increase transparency about egg and sperm donor identity, fertility experts and advocates are watching to see how loss of donor anonymity will affect the pool of available donors.
Surveys of potential sperm donors about loss of anonymity show no clear answer. Some studies have shown a drop in sperm donation in countries that had passed laws banning donor anonymity. A 2016 study from Harvard Law School found that 29 percent of potential sperm donors would not donate if their names were put on a registry.
The impact of loss of anonymity on egg donation is even less clear. While compensation for sperm donors is relatively low, perhaps $100 per specimen, egg donors may be paid thousands of dollars per cycle. Thus an egg donor might be less concerned about the tradeoff between financial compensation and loss of anonymity. In both the sperm bank and egg bank industries, “known” donors, those who are willing to accept future contact with donor-conceived offspring, typically are paid more than anonymous donors.
One South African study of 150 egg donors between September 2017 and August 2018 found that, when donors were asked whether they would remain anonymous or not if the law allowed them to choose, 81 of 150, or 54 percent, said they would disclose their identities; 34 percent, said they would remain anonymous.
In the same study, 95 percent of the egg donors responding said their primary motivation in donating was to help infertile women; only 15 percent, said they were primarily motivated by financial gain.
Intended Parents May Prefer Anonymous Donor
While many intended parents are increasingly open to full transparency about their children’s conception via assisted reproduction, some, for social or cultural reasons, prefer that the genetic details remain secret.
Some fear that a known donor will surface, uninvited, in their and their child’s lives, demanding a parental role or causing other disruptions. Others prefer to keep their reproductive history private from others, fearing familial disapproval or social stigma.
Some intended parents worry that the existence of a genetic “parent” would harm their own parental relationship with their child. As assisted reproductive technology attorney Amira Hasenbush told AbovetheLaw.com in 2019, intended parents tend to worry more about the loss of donor anonymity than the donor does—even though the law in California and in most states clearly states that the intended parents, and not the egg or sperm donor, are the legal parents of the child.
Intended parents also could be impacted if new limits on donor anonymity and/or the loss of privacy inherent in our Internet-connected world has a chilling effect on the pool of available donors and the supply of donated eggs—potentially making creating a family via assisted reproductive technology more expensive.
Donor-Conceived Children’s Right to Know
The U.S. egg donor and sperm donor industries historically have prioritized the rights of the donor to remain anonymous over the rights of donor-conceived children to know about their genetic origins.
But kids grow up.
As IFLG fertility lawyer Molly O’Brien wrote recently:
While your donor agreement will state the intentions or rights of each party to pursue future contact or maintain anonymity, keep in mind that the child who will be born is not a party to your agreement. It is nearly impossible to control the behavior of a person who is not even born yet.
The world’s first successful birth by in vitro fertilization occurred in 1973; the first using donated eggs in 1983. As the children conceived via these new technologies began to reach adulthood, some sought information about their genetic origins, only to be frustrated by sperm and egg banks’ rigid donor anonymity constraints.
In 2000, according to The New York Times, a donor-conceived child, with his mother, founded the Donor Sibling Registry, following in the footsteps of Single Mothers by Choice, a registry started by a single sperm donor recipient in the 1990s. Today, the Donor Sibling Registry, which requires that users be 18 or have parental permission, matches some 1,000 half-siblings or other genetic relatives each year.
Today many experts believe children may be adversely affected if they are denied information about their genetic origins. According to ASRM’s fact sheet for intended parents, “while ultimately the choice of the recipient parent, disclosure to donor-conceived persons of the use of donor gametes or embryos in their conception is strongly encouraged.”
According to ASRM, disclosure builds trust among family members, fosters honest between parents and children, allows parents and children to be forthcoming with their physicians, and avoids the chance that the secret might be forced out during a medical emergency.
In a 2018 report, the ASRM Ethics Committee acknowledges the complexity of juggling the interests of donor-conceived individuals, donors and recipient parents:
Because of each person’s fundamental interest in knowing their genetic heritage and the importance of their ability to make informed healthcare decisions in the future, the Ethics Committee supports disclosure about the fact of their donor conception to offspring. It also supports the gathering and storage of medical and genetic history information that can be provided to offspring if they request. It recognizes, however, that decisions about disclosure are highly personal and it is the recipient parents’ choice whether to disclose the fact of donor conception to their offspring.
Increasingly, advocacy groups such as We Are Donor Conceived are pushing the U.S. fertility industry to give equal weight to the needs and rights of donor-conceived offspring as to those of recipient parents and donors. In its 2020 survey of 481 donor-conceived individuals in 15 different countries, 81 percent of respondents support abolishing anonymous donation agreements, and 67 percent believe the donor’s identity should be available to the donor-conceived person from birth.
One 2020 survey respondent, now 46, wrote to fertility industry professionals:
“First do no harm.” Intended parents may be your “customers”, but what you are creating are not “successful pregnancies” or even “babies,” these are human beings who will grow up, be affected by their experiences, and often go on to have their own children. You are affecting outcomes for generations to come, and there is a significant responsibility that comes with that.
We at IFLG believe that, ultimately, the benefits of transparency and openness for families and donor-conceived children will outweigh any potential chilling effect on egg donation or increased costs. As technology improves and opportunities for family formation expand, the well-being of the child and the family will continue to be our guiding principle.