Skip to main content
Markkula Center for Applied Ethics

Direct-to-Consumer Genetic Testing Calls for Overhaul of Sperm Donation Anonymity

DNA spiral image shaped as a person.

DNA spiral image shaped as a person.

Raghav Gupta ’24

Raghav Gupta is majoring in neuroscience with a minor in philosophy and is a 2022-23 health care ethics intern at the Markkula Center for Applied Ethics. Views are his own.

 

During the Christmas of 2018, Danielle Teuscher gifted her family 23andMe testing kits in hopes of learning more about their ancestral history, specifically for her 6-year-old daughter who was conceived through donated sperm. Unexpectedly, Danielle discovered the mother of the donor of the sperm she received years before. She contacted her daughter’s biological grandmother, telling her she was open to communication with the father. A few weeks later, she received a letter from the sperm bank threatening to sue her for $20,000 and notifying her that her access to remaining sperm would be denied. If she continued to contact either the donor or his mother, the letter warned a restraining order would be filed.

Since the beginning of modern sperm donation, anonymity has been a basic, irrevocable right of sperm donors. But with the rise of consumers’ access to genetic testing in recent years, ethical and legal questions regarding anonymity are more relevant than ever. Children from donated sperm can now identify their biological origins with surprising accuracy. Naturally, we have seen a growing number of cases like Danielle’s in which parents and children have used genetic testing to find their biological fathers, leading to affectionate reunions in some cases and harsh legal battles in others.

The Illusion of Anonymity

Changes in genetic testing have prompted many to ask what they think is the central ethical question: is it ethical to ban anonymity? In June 2022, Colorado was the first state to pass legislation that outlawed anonymous sperm donations. Though several states offer the option for donors to reveal their identity, nowhere else in the United States is anonymity illegal. Even the most progressive policy (besides Colorado) in Washington still allows donors to opt out of having their information shared with donor-conceived children. Why do states continue to guarantee anonymity? 

The largest concern people have with non-anonymous sperm donation is that fewer people will be inclined to donate, and there will not be enough donors to meet demand. This, however, is a gross misinterpretation of the current situation. Anonymity is gone. I argue that it is unethical to allow sperm banks to continue to guarantee anonymity when we know it cannot be. Even though donor numbers may drop, the primary ethical concern at stake is the right of donors to know that they can be and will be found by donor-conceived people. We cannot bypass the ethics involved for the sake of pragmatism. 

This stark gap between ethics and legislation is shocking. States and clinics around the country seem to be lying to their donors and withholding information about how protected their anonymity is. Despite clear evidence that genetic testing renders guarantees of anonymity useless, information on it is not offered to donors at the time of donation. Many donors may not understand the implications of direct-to-consumer (DTC) genetic testing on their privacy, and it is the duty of states and clinics to educate and inform them. This is the real ethical problem we are experiencing. Action can be, and should be, taken right now to prevent further harm to donors that are being misled. 

Implications for Various Stakeholders

Once anonymity is banned, the harder questions lie in the ethical implications that transparent donations have on the stakeholders. Furthermore, how do we protect sperm donors that were promised anonymity before DTC genetic testing? And how can we best facilitate interactions between children and their biological donors? The multitude of groups involved in sperm donation make the ethical considerations of the practice multifaceted and complex. I would like to focus on the donor and the child, who are the main stakeholders and have different needs and stakes in the problem.

Donors:

The most concerning issue regarding donors is regarding those that were guaranteed anonymity when they donated sperm. This group is composed of people who donated before DTC testing became widespread, as well as those who donated at clinics that still offer guaranteed anonymity. This group of people have lost their autonomy over how their personal information gets to be shared. Whether or not they want to be contacted by their biological children is no longer a decision in their control.

What can we do to put power back in their hands? The first step is transparency. Clinics should be obligated to inform donors about the reality of DTC genetic testing and the possibility of donor-conceived persons finding and contacting them. Donors will then have a chance to consider if they really want to donate, given they can’t remain anonymous. After collecting samples, clinics should provide resources for donors on how to best interact with future biological children if contacted. These interactions can be incredibly complex and usually carry lots of emotional weight. Though we can never predict exactly what will happen, we should give donors the tools to navigate these situations.

Donor-Conceived Persons:

Recently, there have been growing movements started by donor conceived people to end anonymity. People conceived from sperm donation are another group with a remarkably small sense of autonomy in this process. They have no choice in the process of donation, and often experience growing up with a feeling of loss or confusion about their biological origins. How do we best protect this especially vulnerable group?

Many people without this option experience an identity crisis and feel lost about their past. This is one of the most exciting parts of eliminating anonymity. We are giving more power to donor conceived people by allowing them to choose whether they want to know who their biological father is or not.

Further, the shame and disgrace that has been so long associated with sperm donors has long hurt the identities of donor-conceived people. By promoting greater transparency and honesty in the donor-conceived community, it sends a message that there is nothing to be ashamed of. Societal openness of one's origins is immensely powerful in letting a community know they are accepted.

Conclusion

The shift towards non-anonymous sperm donation is an important development in the field of reproductive medicine. There are advantages and disadvantages to this approach, but DTC testing has left us no reasonable choice other than to eliminate anonymity. It is completely unethical for clinics and government officials to uphold the idea that anonymity can be guaranteed. For the sake of all parties involved, the truth must be told.

A non-anonymous system is still a new concept and we by no means have all the answers right now. But if we prioritize the most vulnerable groups and place their needs first, we can start to move towards a better system. In the near future, hopefully the stigmas around donor insemination fades, and we can learn to be fair to all groups involved.




Jun 8, 2022
--

Subscribe to Ethics Center Blogs

* indicates required
Subscribe me to the following blogs:

Make a Gift to the Ethics Center

Content provided by the Markkula Center for Applied Ethics is made possible, in part, by generous financial support from our community. With your help, we can continue to develop materials that help people see, understand, and work through ethical problems.