Navigating ethical and legal quandaries of sperm donation in the era of 23andMe

By Naveed Saleh, MD, MS | Fact-checked by Barbara Bekiesz
Published March 7, 2024

Key Takeaways

  • Sperm donation is very lightly regulated in the United States, making the field rife with ethical and legal quandaries primarily related to unknowns about long-term donor health.

  • As the full medical history of donors is often unknown, families receiving a donation aren’t able to account for certain genetic disorders and other health conditions that may require treatment.

  • Increasing popularity for the products offered by companies like 23andMe means the conversation around sperm donation is evolving—including in the exam room.

While sperm donations are an invaluable part of reproductive healthcare, anonymous sperm donation can lead to a contingent of offspring who bear the phenotype of their forebears but lack the context of inherited medical history and risks.

At the same time, direct-to-consumer genetic testing enterprises, such as 23andMe, have piqued public interest in genealogy, contributing to a loss of anonymity between some donors and the donor offspring. 

For these and other factors, the field of sperm donation is rife with moral and ethical concerns that warrant further consideration by clinicians.

The regulatory landscape

An article in the Journal of the American Academy of Matrimonial Lawyers gives an overview of this part of reproductive medicine.[] As the author explains, the federal government has remained mostly laissez faire with regard to the regulation of reproductive technology. Consequently, regulation of the sperm donation industry is thin.

The FDA only requires a medical record review of the sperm donor and screening for infectious disease, such as HIV or hepatitis. The American Society for Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technology (SART) created standards for voluntary clinic accreditation, but many clinics do not participate.

“Without federal regulation,” the author writes, “an array of issues exist in the sperm donation industry, such as limitless donations by donors, lack of extensive, physical and mental donor health testing and screenings, and secrecy about long-term donor health due to anonymity.”

The risk of unlimited donations

According to the overview article, between 75% and 80% of sperm donations come from 5 of 26 US sperm banks. These sperm banks don’t report how many children are born from each donor, and there are no laws limiting such contributions. Lack of federal regulation has prompted some sperm banks to self-regulate to combat the issue, but a uniform system is lacking. 

Regulation is important to stop one person from fathering an excessive number of children, as was the case with one sperm donor who sired 150 children.

Other countries limit such contributions: The Netherlands, for example, permits only 10 families per donor. As well, unlimited donation—especially in a concentrated geographic area—poses the risk of inadvertent consanguinity (ie, incest). 

Health screenings

Except for the FDA’s screening requirement, there are no other health screens required by sperm banks. The ASRM recommends that sperm banks adopt more rigorous screening, which would include a detailed medical history, tests for genetic diseases, and psychological assessments and counseling. However, this guidance is not binding. 

At present, there is no verification of a donor’s medical history, education status, or criminal history. Sperm banks also don’t monitor long-term health of a donation, so the offspring’s risk for genetic conditions may go unrecognized. 

One study conducted by the Donor Sibling Registry indicated that 84% of its surveyed sperm donors never received requests for medical updates, and about 25% said they had important medical updates to share if contacted.[] These findings underlie the importance of monitoring family history.

Some sperm banks do test donors for a gamut of genetic conditions and provide in-house genetic counselors, but there are still blind spots and false assurances of risks. Some of these may be due to gaps in our knowledge of the genetic drivers of cancers and other diseases, for example, as noted by authors writing in Cancer Cytopathology.[] 

It is also possible that a genetic variance of unknown significance may later prove to be pathological. In these cases, would the sperm bank notify the donor and recipients? Expanded databases that permit more accurate polygenic risk scoring could be an answer. Currently, full disclosure about disease risk depends on the ethical and moral responsibility of donors and sperm banks.

One potential legal ramification that arises from expanded testing capabilities involves tort law related to the “foreseeability of harm”—ie, the foreseeability of transmitting a genetic disease to an offspring. In other words, sperm banks could be sued for potential damages if they decided not to perform genetic testing and an offspring was born with a genetic disease.

The question of anonymity

Concealing the identity of a sperm donor has been thought to be in the best interest of children, parents, donors, and donor-conceived offspring because it spared the stigma of male infertility and the use of donor sperm to conceive. However, according to an article in Fertility and Sterility discussing the evolution of information-sharing in the sperm-donor community, this attitude later changed.[] 

In the 1990s, the adoption community started providing more information regarding birth parents. Similarly, requests for information increased from individuals who learned they had been conceived via sperm donation. As a result, mental health professionals began to advocate for openness and information sharing, and online forums from organizations like the Donor Sibling Registry sprang up to assist in these efforts.

In 2004, a report by the Ethics Committee of the American Society for Reproductive Medicine recommended informing donor-conceived individuals of their donor gamete origin. By 2007, 23andMe and other direct-to-consumer genetic testing enterprises piqued public interest in genealogy, and many donor-conceived children thereby learned of their origins.

Mental health professionals now counsel parents about the need for disclosure and on when and how to disclose the donor sperm use to the affected child or children. The claim is that full disclosure in early childhood is related to improved parent-child psychosocial outcomes.

Nevertheless, there are pros and cons to anonymity.

Authors writing in the Journal of Law and the Biosciences state that, “The most prominent argument for prohibiting anonymity has been that donor-conceived children are harmed when they do not have access to the identities of their genetic fathers.”[] This is sometimes framed in the language of rights, as a “right to know one's genetic origin.” One major argument against prohibiting sperm-donor anonymity is that donors would be less likely to donate, a problem that could be overcome with higher compensation for donation. Whatever the case, there are no easy answers to the issue of anonymity and gamete donation.

In the meantime, as experts continue to examine the ethical and legal ramifications, the ASRM recommends that sperm banks make it clear that anonymity is unguaranteed at present.

What this means for you

As a physician, you may encounter any number of patients who have been conceived by means of sperm donation. This poses important questions related to family medical and social history. Patients themselves may want to know more about the donation process, particularly donor eligibility and screening. Currently, bioethicists, physicians, and lawyers are deliberating complicated issues surrounding sperm donation, including industry regulation, genetic testing, and the right to anonymity.

Read Next: Health privacy laws and potential risks to patients after 23andMe data breach
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