Open or De-Identified Donation – What Type of Arrangement is Right for Your Donor-Conceived Family?

There are 3 common types of arrangements to assess, plus a means of securing important health information, at a minimum, for donor-conceived families:

1. De-Identified Egg Donation
2. Open Egg Donors
3. Semi-Open Cycles
4. EDC Nexus, a bridge to the future

1. De-Identified Egg Donation

The more traditional path is still "de-identified" (previously referred to as "anonymous") donation with the notion this option helps to protect the anonymity and privacy of all parties involved: egg donor, future parent(s) and donor-conceived offspring. Understandably, this goal can be particularly important in cases where the intended parents have concerns around cultural stigma, or fear of rejection ( from extended family and possibly from the child themselves), not to mention anxiety surrounding unwanted future contact from their donor. Additionally, de-identified donation may provide a sense of separation and disengagement from fertility struggles that can be difficult to achieve when a donor is known to the parents and child(ren).

However, this type of egg donation has its drawbacks. For one, intended parents may not have access to all the information they need to make informed decisions about their children's medical care should issues arise. Additionally, the lack of personal connection between the donor, intended parents, and most importantly donor-conceived offspring can be a source of anxiety or uncertainty, particularly as the child grows older and may have questions about their genetic origins.

At present, it is absolutely worth noting that anonymity is increasingly difficult to maintain, and this is the main reason behind a shift away from the term "anonymous" in favor of "de-identified" as it relates to egg donors (and sperm donors). With the rise of direct-to-consumer genetic testing companies like 23andMe and Ancestry.com, donor programs cannot promise to protect the identities of the parties involved. Even when a donor's identity is kept confidential at the time of donation, if a donor-conceived child elects to undergo genetic testing, they may be able to discover their biological parent(s)' identity through a simple spit sample. Additionally, as more people undergo home testing, it is feasible that genetic relatives of the donor, such as half-siblings, grandparents, aunts, uncles and/or cousins, may be revealed to all families involved – and this would be a regrettable "surprise" if not previously informed of their origins.

2. Open Egg Donors:

Open (also referred to as "known") egg donation, on the other hand, involves the possibility of direct contact between the intended parents and the donor, before and/or following the donation process. These donors may be friends or family members, or they may be previously unknown young women who have chosen to share their identity and contact information with the intended parents. This approach can provide a greater sense of connection and community, as well as access to more detailed information about the donor's health history, genetic predisposition and lifestyle.

A significant emotional benefit of open egg donation is the ability to create a sense of transparency between the donor, intended parents, and the child. Open donors may be more available to the families they helped create and may be more inclined to keep them informed of medical developments that could prove vital to the child's health and welfare.

However, open egg donation also has its challenges to consider. Parents & donor-conceived children may feel obligated to maintain a relationship with their donor and fear the perceived pressure of ongoing communication and contact. Additionally, open donation may raise questions about the donor's role in the child's life and may require clear boundaries and expectations from all parties involved. Yet legal contracts and consents are put in place, prior to egg retrieval, with the intent to clearly define parameters, rights and responsibilities of all parties.

3. Semi-Open Cycles:

For intended parents searching a middle ground between two choices, "semi-open" egg donation may be an ideal scenario if available through your clinic's or agency's program. This option can provide a level of reassurance to both the donor and the recipient while still maintaining some degree of privacy and distance. It is a good option for donors who truly care and are invested in the outcome of their cycles but don't necessarily want to exchange contact information, at least at the beginning of the journey. This may also serve intended parents who wish to stay connected to their donor, for the sake of their offspring, without feeling as though direct contact is required.

4. EDC Nexus, a bridge to the future:

Regardless of the type of arrangement you undertake (de-identified, open, semi-open), EDC Nexus is a vital resource for everyone involved in ovum donation, including reproductive attorneys, therapists, genetic counselors, fertility clinics & egg donor agencies. This first-of-its-kind registry was developed to help ensure everyone's mental & physical continued well-being by connecting families with their egg donor, either openly or de-identified, through a private and HIPAA-compliant online database. Donor-conceived families have the opportunity to receive updates, alerts and vital information related to their donor's personal, and family, medical history as it evolves over the years. From the donor's perspective, she has the peace of mind knowing her gift has transformed lives and will also benefit from any reciprocal sharing of information. Where contact is welcomed, parties have the ability to communicate via email, and even exchange photos, through a discreet messaging system where identities can be revealed or remain confidential depending upon comfort levels. Ultimately, the goal is to support donor-conceived children of third party reproduction by providing them with transparency and access to information critical to their peace-of-mind.

Ultimately, the decision to use an open or de-identified egg donor depends on a plethora of factors, including personal preferences, medical history, and access to potential donors. It's important for intended parents to carefully consider their options and when deemed necessary, to seek guidance from the donor-conceived community, mental health providers, and clinicians. Yet the most important take-away is that regardless of a donor-intended parent relationship, disclosure to donor-conceived offspring, regarding their genetics and origin, is of paramount importance and must be acknowledged. There is no doubt that with the right support and resources, egg donation will help build families and enrich lives in immeasurable ways.

Jenna Lake

Jenna Lake is co-founder of EDC Nexus, a unique registry developed to support Intended Parents, Egg Donors and Donor-Conceived Offspring — identified or de-identified — through a private online database providing medical updates and a mode of communication.

First and foremost, Jenna is the proud mother to a teenage, egg donor-conceived son. Her journey through third party reproduction directly launched a 15+ year career overseeing one of the largest clinic-led egg donor programs in the United States. After matching more than 3,000 cycles, and witnessing the ever-increasing demand for donor-conceived families to connect with their genetic and biological stories (and donors to stay informed of their contribution), Jenna helped to create a secure means of exchanging vital information and ensuring greater peace-of-mind on many fronts.

Currently, Jenna also serves as Operations Manager at Egg Donor Connect. She is a past board member of Parents via Egg Donation, former consultant for a surrogate agency, and the author of several articles focusing on Egg Donors and Intended Parents. Jenna can be reached through her LinkedIn profile, or via email at jenna@eggdonorconnect.com or coordinators@edcnexus.com.