Demystifying the Donor: A Call for Transparency in Reproductive Technology
Beginning in 2018, my family grew by one to four siblings roughly every year until I had a total of seven sisters and one brother in 2023. We are all the same age and we all attend universities on the East Coast. We did not grow up together, nor do many of us have a relationship beyond a connection through blood. We are the offspring of a sperm donor. For my bizarre, rather large family, the option to meet our father was determined before we existed: From conception to the day we die, we are not allowed to reach out to our father. At least, these are the terms that our father agreed upon when donating his sperm. For the nine of us, there is an unfillable void that, despite the similarities we look for among ourselves and our mothers, we cannot fill.
This is reality for the majority of people conceived via gamete donation. In a 2020 survey conducted by We Are Donor Conceived (WADC), a resource center for donor-conceived people to share their lived experiences, 89% of respondents reported that their donor parent had opted to remain anonymous instead of allowing their adult offspring to contact them. This is largely unsurprising, as donors have a tangible interest in avoiding future monetary demands, maintaining their known family’s privacy, and preventing themselves from becoming a parent to a child that they had no intention of raising. Nevertheless, in 2019, 74% of respondents to WADC’s survey reported opposing the practice of anonymous donor conception, with the proliferation of direct-to-consumer DNA testing having rendered truly anonymous donation infeasible at best. This presents a problem to families like mine and to the representatives that are supposed to serve them. Given the complications that rapidly advancing technology poses to gamete donation, lawmakers can and must sponsor new regulation to account for a reality in which privacy and anonymity are no longer secure. The only effective way to achieve such regulatory clarity is to mandate the release of gamete donors’ identifying information to their donor-conceived offspring upon request from their adult offspring.
For the majority of donor-conceived people, the absence of their biological parent figures massively into their overall identity. That’s why, as DNA testing has become more widely accessible, an increasing number of donor-conceived people have used it as a method of uncovering the mysteries within their families. Over 90% of participants in both the 2019 and 2020 WADC surveys had conducted DNA tests. Many others have turned to massive online communities whose sole purpose is to use genetic ancestry to find matches between unknown relatives. One such Facebook group, called “DNA Detectives,” boasts over 210,000 members dedicated to “using DNA to find biological family for adoptees, foundlings, donor-conceived individuals, unknown paternity and all other types of unknown parentage cases.” These communities exemplify the fact that, for most children of donors, finding their parents is not just some distant dream to be thwarted by their wishes for anonymity; it is a necessary step in finding themselves.
Donors don’t share the same concerns, to say the least. Though an overwhelming majority of them disclose their donations to partners, only slightly over half inform their extended families. An even lower 30% disclose such information to their known children. By seeking out their biological parents without consent, donor-conceived people embark upon their journeys of self-discovery without fully understanding or caring about the ramifications their efforts may have on their donor’s life and relationships. Finding and contacting ostensibly anonymous donors certainly disrespects their wishes, but may also sacrifice their known family’s stability and peace of mind. As a result, only 60% of donors have reported that they would donate again in light of the rise of direct-to-consumer genetic testing. Moving forward, aspiring donors must understand that anonymity is no longer guaranteed. Funnily enough, in order to achieve this, we need to know exactly what changes need to be made and who is responsible for making them.
In the United States, the gamete donation industry is accountable to various regulatory agencies, which mostly results in piecemeal solutions to characteristically interrelated issues. The American Society for Reproductive Medicine has published guidelines that it recommends all fertility clinics follow during the donation process. Only in these guidelines are pertinent issues such as donor anonymity, mental health screening, genetic testing, and legal consultation for donors and recipients meaningfully addressed. That these are mere recommendations instead of bonafide legislation betrays a fundamental misunderstanding of the true stakes at play for donor-conceived individuals: Without a mandate for mental health screening and with virtually no access to their genetic lineage, those suffering from mental health or chronic illness are left without any meaningful insight into the origins of their ailments. Each policy vacuum exacerbates the next, and families like my own are left with just as many questions as answers.
Even where there have been substantial efforts toward regulatory clarity, they have historically missed the mark. The Food and Drug Administration (FDA) regulates human cell and tissue products––including donated eggs and sperm––primarily to prevent the transmission of communicable diseases. Yet none of the clauses in the FDA’s Code of Federal Regulations §1271 address the interactions between donors and donor-conceived offspring. To fill in the gaps, several states have passed their own laws and regulations governing gamete donation practices, covering issues such as donor eligibility criteria, consent requirements, offspring rights regarding contacting their donor, and other aspects of the process. As a result, the highly consequential and ethically complex terrain of gamete donation is being navigated by a disjointed array of guidelines and statewide half-measures rather than a cohesive body of federal law.
Such regulatory neglect has detrimental consequences for aspiring families. In recent years, over 50 cases of fertility doctors deceiving their patients by inseminating them with their own sperm have surfaced, resulting in at least 20 lawsuits. The most famous of such cases involves Dr. Donald Cline, an Indiana-based fertility doctor who fraudulently fathered at least 90 children. Without comprehensive legislation, fertility fraud will continue to plague countless families, leaving donor-conceived children with false information about their genetic history and some potentially traumatic revelations later in life. An industry tasked with bringing new lives into the world through carefully selected donors should not be tarnished by doctors taking things into their own hands, so to speak.
Fertility doctors fraudulently using their own sperm instead of the chosen donor is also self-evidently a deplorable breach of trust and a violation of the patient’s reproductive rights. It robs families of their autonomy in choosing a donor based on desired characteristics, deprives children of accurate knowledge about their genetic origins, and has invariably profound psychological impacts on everyone involved. Disrupting the legislative status quo and codifying the end of anonymous donations would act as a functional safeguard against doctors who fail to respect their ethical obligations.
Fortunately, there is at least some hope for legislation that more directly focuses on relationships between offspring and their donors. In 2022, after a Grand Junction jury awarded $9 million to families victimized by one Dr. Paul Jones, Colorado became the first American state to codify protections for donor-conceived offspring and families in the Donor-conceived Persons and Families of Donor-conceived Persons Protection Act. This law mandates that “[u]pon request of a [donor-conceived person] who is 18 years of age or older,” clinics must provide “identifying and medical information to the [donor-conceived person] or the [donor-conceived person’s] legal parent or guardian.” Although spurred by the case of Dr. Jones, Colorado State Senate President Stephen Fenberg stated “[t]his bill recognizes” the reality that at-home DNA testing compromises anonymity “and affirms that while shared DNA does not always make a family, the identity of the donor is important to the health and identity of many donor-conceived persons.”
Other states have also begun to make headway in the push for more expansive regulations regarding gamete donation. Though not nearly as progressive, California, Connecticut, Rhode Island, and New York all have laws mandating the collection of donor information—such as name, date of birth, and address—by clinics. In all of these states aside from New York, fertility clinics must make an attempt to notify anonymous donors if the offspring wishes to make contact and allow the donor to rescind their anonymity declaration. While Colorado took a pioneering step, much more comprehensive federal regulation is needed to bring the kind of consistency that would protect the rights of donor-conceived people across the United States.
The stories of those like myself and my eight siblings illustrate the human impact of the policy vacuum around this increasingly prevalent method of family building. While abstract legal and ethical debates play out, we grapple with profound issues of identity, connection, and access to information that are essential to understanding ourselves. Policymakers can no longer rely on a patchwork of professional guidelines to address the complexities of this issue. Comprehensive federal legislation is urgently needed to get ahead of rapidly advancing consumer technologies and fundamental violations of reproductive rights. Both donor-conceived people and donors deserve to have their interests properly balanced by the full scrutiny of the democratic process—not mere guidelines. It’s time to replace the ad hoc non-system with binding rules that protect all stakeholders, parent and child alike.
Henry Michaelson (CC ’25) is a columnist at CPR and a philosophy major with a statistics concentration. He can frequently be found playing chess in the libraries instead of doing his homework.