Traditionally, the identity of sperm and egg donors were kept strictly anonymous, but this is changing. A recent position statement from the American Society for Reproductive Medicine concerns this ethical issue.1

According to the report, “The expectation of absolute anonymity has evolved into an expectation that recipients will have more information about donors, and vice versa, and even a possibility of future contact between parties.”

When donors are kept anonymous, “there are a lot of ethical issues that come up,” says Robert Klitzman, MD, director of the online and in-person master of bioethics program and a professor of psychiatry at Columbia University.

In vitro fertilization (IVF) use and, therefore, sperm and egg donors continues to increase. “The kids usually never find out they were created by a donor. If they do, they have no easy way to find out who the person is,” Klitzman notes.

Many parents do not even tell their friends or the child’s pediatrician, afraid the child will find out. “Ethically, that creates a lot of problems. Whether they have a right to meet the person has to be mutually agreed on. But people have a right to medical information,” Klitzman says. For many years, there was a similar situation with adoption records. “In the 1970s, there was a realization that, ethically, people have a right to know about their biologic and genetic origin,” Klitzman recalls.

At the time, adoption agencies opposed this. Similarly, says Klitzman, “some IVF providers are very wary of ending anonymous donation.”

Lack of records is a significant ethical concern. “The fact that you have no record anywhere is a problem,” Klitzman observes. “The need to address anonymity is part of a larger need to oversee and monitor, and perhaps regulate, egg banks and sperm banks.”

Disclosing donors’ identity could mean the IVF industry passes those costs on to prospective parents. “Given the high costs that are already associated with assisted reproductive technologies, this may create a challenge, as not everyone may be able to pay,” says Maya Sabatello, LLB, PhD, assistant professor of clinical bioethics at Columbia University.

Some people may be reluctant to donate if privacy cannot be assured. Prospective parents may express their own concerns about privacy. “They may prefer anonymity because of concerns about involvement of a third party in the family,” Sabatello suggests. A couple who chooses to use donated gametes against cultural or religious norms may be vilified. “Keeping it quiet allows the couple to stay a part of the community while having a child that they cannot otherwise have,” Sabatello explains.

Traditional practices of anonymity in gamete and embryo donation have gone through important transformations already. “Historically, these practices were carried out in secrecy. The medical recommendation was to keep them a secret, even from the resulting child,” Sabatello reports.

Today, donors are recruited in public places. Prospective parents often can choose from a list of possible donors, as well as decide whether they would like to keep the donor anonymous. “The rise of nontraditional families also impacted this practice,” Sabatello adds.

Growing children are asking for explanations about their conception. Parents who used gamete donation and delivered a child with disabilities advocated for more medical information about the donor, sometimes to find a diagnosis. “Changes and practices vary significantly across countries,” Sabatello notes.

Some countries still uphold donors’ anonymity. “On the other hand, there is a growing trend among European countries to reverse the policy of anonymity,” Sabatello says.

Some laws require donors’ information to be recorded in a national registry. Donors have to agree to be contacted in the future by the resulting child. “Under this approach, parents maintain the power as to whether to share with the child the story of conception,” Sabatello says.

It is the child who needs to trigger the disclosure process. “Exact conditions for contact differ. Some require that this child reaches age 16 or above, others just require sufficient child maturity,” Sabatello says.

In some countries, an addendum is added to the birth certificate of children born as a result of gamete donations. “The idea is that children should know their story of origin and be able to connect with biological parents,” Sabatello adds.

Direct-to-consumer testing has “changed the rules of the game,” Sabatello observes. There are anecdotal accounts of people who decided to conduct ancestry testing and found they had no biological relatedness to the people they thought of as their parents. “In some cases, they were able to track down the biological parent. We are likely to hear of more such cases in the future,” Sabatello predicts. Some consumers have found many half-siblings through direct-to-consumer genetic testing, and realized that they must be related through a sperm donor. “They then feel betrayed by their parents, who never told them,” Klitzman says.

Technology is, in part, driving the changing attitudes about anonymity, since people are finding the information on their own. “As that becomes more of the norm ... attitudes and practices are going to change,” Klitzman predicts.

It remains an ethical balancing act between the rights of children and their parents — and also the third party involved in reproduction. “Donors who donated many years ago under the veil of anonymity may have not imagined the technological possibilities that we have today,” Sabatello offers.

Others still may oppose disclosing their identity. Certain individuals may change their minds, but there is little recourse for them at this point. “People who donate today and want anonymity should be aware that it may not be possible to guarantee that,” Sabatello cautions.

Considering the rise of genomic consumers and increased awareness of the rights of children, Sabatello says it is “a hard sell that donors can be, or should be, anonymous. Their act has implications and the child’s interests should be considered.”

REFERENCE

  1. Ethics Committee of the American Society for Reproductive Medicine. Interests, obligations and rights in gamete and embryo donation: An ethics committee opinion. Fertil Steril 2019;111:664-670.