The modern world makes it inevitable that egg, sperm and embryo donor anonymity is simply not possible. More donor conceived individuals are turning toward direct to consumer genetic DNA testing to find a possible genetic link to: 1) the donor; or 2) a family member of the donor; or 3) genetic siblings. This can create confusing boundaries and ethical considerations on potential contact and what to do with this information. It can also create connection and relationships with supportive linked families for donor conceived individuals.
Finding non-disclosed (anonymous) donors on social media using donor agency profile information, or using facial recognition technology with the provided donor photo has become the norm. Many complex feelings arise with the uncertainty of what to do with this information once it is obtained. Currently in the U.S., egg and sperm donation is a mostly unregulated industry; however genetic connections through consumer DNA testing, and the reality of the lack of true anonymity, will ultimately change that.
Have you ever had to keep a secret? Or made a decision that with time and reflection, was understood differently? It’s helpful to consider that privacy expectations of intended parents or donors may change over time. When that happens, some may look for ways to reach out and promote connection (or rescind contact). Direct to consumer genetic testing has stepped in to fill this void.
For intended parents, the weight of this decision increases once their young child develops their own personality and starts asking questions about their birth story or why they have a unique medical difference. For egg and sperm donors, the weight of this decision typically surfaces once the donor becomes a parent themselves, or upon receiving an e-mail with a subject line inquiring if they were a donor or a link stating ‘you have new DNA relatives.’ This reality has been reflected more often in recent years through the news, TV and film, and social media highlighting the positive and negative outcomes of these unanticipated donor / child connections.
It is beyond question that a donor conceived individual will learn of this information at some point in their lives. This is why mental health professionals recommend sharing this information from an early age. Let’s start reframing this path to parenthood as a family story with connectors from the onset. For donor conceived children, finding genetic connection can be an important part of becoming secure in one’s identity. Note the difference in knowing ‘this is my genetic identity, my parents are here to talk with me anytime about the donor and how we came to be a family, and there are genetic siblings who were also helped that I am connected to’ versus one day either finding this out on your own through genetic testing, or being sat down and told about donor conception once with no context and no additional information. Time will stand still at that moment. A family story with openness to sharing information, conversations over a lifetime, and figuring things out together offers fluidity, closeness and integration.
As for the future of family building, it starts with understanding that genetic donation is an open, multi-generational commitment. States are starting to consider these nuances. In the U.S., CO is the first state to enact a law (effective Jan 1, 2025) where all prospective donors must agree to identity disclosure when the donor conceived person is 18. The CO law also limits the number of families to 25 who can use the same donor. Four other states (CA, CT, RI, and WA) have enacted laws that allow adult donor conceived individuals (starting at age 18) to seek out information on the identity of the donor; however some of these laws currently make it optional for the donor to agree to any disclosure. Other states currently have proposed donor identity release legislation in process.