Our Stories: Why Donor Advocacy Matters with Rachel Lemmons
NEWS: Today the Colorado State Senate passed The Donor-Conceived Persons and Families of Donor-Conceived Persons Protection Act. This landmark decision garnered bipartisan support and will drastically improve standards for donor-conceived people and donors alike.
This is Our Stories, a new series by We Are Egg Donors (WAED), that digs into the real stories behind the volunteers who make our community possible. Today WAED has thousands of members committed to transparency and better standards for egg donors. Get to know Rachel Lemmons and her passion for egg donor advocacy, and how she led WAED’s partnership with other organizations to pass this landmark bill.
Enter Rachel.
WAED: Hey Rachel! 👋 Tell us about you.
Rachel: I live in Denver, Colorado and work as an environmental regulator for the state. I’m a mom and a wife. I’ve been a moderator and part of the We Are Egg Donors leadership team since 2017.
WAED: Can you tell us about your journey as an advocate? What experiences inspired it?
Rachel: As I went through several egg donation cycles I began to have concerns with how I was being treated by donor agencies, clinics, and even recipients. I felt like I wasn’t being heard. I felt like I wasn’t a patient and my health wasn’t the priority. I felt like the recipients didn’t care about the things they agreed to in our contract. I wanted that to change for myself and for future donors.
Pictured (left to right): Rachel Lemmons (We Are Egg Donors), Christina Spencer (donor-conceived person and advocate), Tyler Sniff (Vice President of Legal Affairs, US Donor Conceived Council), Sen. Stephen Fenberg (Colorado Senate President and primary sponsor of SB22-224), Mindy Miller (Senior Advisor & Assistant to Sen. Fenberg), Erin Jackson (CEO and President, US Donor Conceived Council)
WAED: How did We Are Egg Donors impact your life?
Rachel: I felt so alone in my first donation experiences partly because I had no other donors to talk with. Once you start connecting with other donors you really begin to realize it’s not just you that has these concerns and experiences. WAED finally gave me the chance to connect with people who understood what I was going through because they had gone through the same exact thing. You’re able to draw from collective experiences and learn how to better advocate for yourself and others. I also love being able to talk to new donors about important considerations that agencies, clinics, and banks may never mention.
WAED: Tell us about this bill. What is it?
Rachel: This bill introduces standards that improves the lives of donor-conceived people and donors in the following ways:
All anonymous donations become open ID donations. Donor conceived persons gain access to the donor’s identity at age 18.
Clinics must collect updated medical information from donors and provide that to donor-conceived people and their families.
Anonymous egg donors can only undergo six cycles.
Donors must be 21 or older.
A donor’s gametes cannot be used to establish more than 25 families worldwide.
Donors must receive educational materials on the interests and challenges faced by donor-conceived people.
Worth noting: The bill would not be retroactive and would only apply to donations that take place on or after January 1, 2025.. This legislation will impact donors in other states if they donate to a clinic in Colorado, donate to recipients that are Colorado residents even if at a clinic in another state, or donate to an egg bank that could potentially sell eggs to Colorado residents.
WAED: Why is it important?
Rachel: This bill reflects the reality of donor conception in the modern age and creates a realm of ethical integrity throughout a severely under-regulated industry. We have to acknowledge and respect the fact that there will always be egg donors that want to maintain anonymity in this process. However, we need to be realistic too. Anonymous donors can and have been found through Ancestry and 23andMe even if they never take a test themselves. There is no longer guaranteed anonymity and we are doing a disservice to donors, donor-conceived persons, and recipients by pretending there is.
Secondly, we need to recognize that donating eggs creates real people on the other end of this. This seems like such an obvious statement but it’s really not something that’s incorporated into current donor education. We as donors aren’t told what the people conceived from our donations need, desire, and deserve from us. This bill would provide for education that addresses those topics. There’s no system that gathers updated health information from donors post-donation and disseminates that information to donor-conceived persons and their families. It’s easy to take for granted the information we have about our evolving family medical history, but it’s something that donor-conceived persons often do not get and it impacts the healthcare they receive.
The bill recognizes the unknown health risks in repetitive donation beyond six cycles by creating a six-cycle limit. It limits the number of families that can receive an anonymous donor’s eggs, which can benefit a donor, her children and her family because the concerns donor-conceived persons have about too large of a half sibling network can also affect donors and their family members.
WAED: What surprised you about the opposition’s arguments?
Rachel: One of the arguments made in opposition of the bill was that it takes away the reproductive and bodily autonomy of egg donors by limiting the number of cycles to six while also not placing the same limit on men as sperm donors. I found this argument problematic for several different reasons. There’s clearly a lack of research on the long-health outcomes of egg donors, which directly relates to the issue of making an informed decision over one’s body and reproductive system. Many clinics already adhere to ASRM’s guideline of a limit of six cycles for egg donors. Furthermore, more prospective donors are denied from donating than the number that are approved to donate. Calling this an issue of bodily autonomy when most people are denied from donating seems to forget that egg donation is inherently exclusive, not inclusive.
WAED: What would you like to see in future legislation that impacts egg donors?
Rachel: Donors have no legal access to information on the outcomes of their donations, including the number of resulting embryos or live births. There has been a huge focus on ensuring DCP have access to information about the donor’s identity and access to the donor’s health information because it impacts how DCP receive medical care. Donors should realize having information about the number of live births that result from their donation can help them mentally prepare for the number of DCP that could reach out to them one day. It can also help them have these discussions with their own family members and their children because their children become part of that network of half siblings. Sexual consanguinity is a concern for a donor’s children when they don’t have knowledge of how many half siblings they have or where those half siblings live. It’s reasonable to expect that a donor’s child may be interested in connecting with some of those half siblings.
I would love to see a bidirectional flow of information between donors and donor-conceived persons when it comes to health information and outcomes of donations. As much as knowing a donor’s health history can benefit donor-conceived persons when it comes to getting medical care, the health history of donor-conceived persons can impact how donors and their children get medical care too. While SB22-224 only provides for the flow of information from donor to donor-conceived persons, it lays down the essential framework for developing a sophisticated system to gather essential information and permanently store records.
This is a major first step. If donors ever gain rights to access this information, at least this record-keeping system would already be in place.
WAED: What’s next?
Rachel: This bill represents the first phase of this type of legislation. The plan is to introduce more legislation that covers other aspects of donor-conceived persons and donor protections, such as regulating donor recruitment material, as well as introducing similar legislation in other states.
Finally, I am hoping that giving egg donors a voice can push to amend existing laws. Colorado recently passed a law on the misuse of human reproductive material. This law makes fertility fraud a prosecutable crime and gives legal recourse to donor-conceived persons and their families. Donors were left out of this. If our donated eggs are used by a clinic in a way that we did not agree to, or a recipient donates embryos created from our eggs when our contract prohibits it, we as egg donors don’t have the same legal remedies even though it’s just as much as a violation to us.
WAED: Is there anything else you’d like to add?
Rachel: Every level of advocacy matters. Whether you’re pushing for a Lupron trigger or speaking in front of your state legislature, you have the ability to create a better outcome for yourself and others, especially if you share your self-advocating experiences with other egg donors.
As of the date of this publication, SB22-224 has been passed in both the Colorado Senate and House of Representatives. It will now go to Colorado Gov. Jared Polis’ desk. Update: Colorado has become the first US state to ban anonymous gamete donations. To read more, see this Wall Street Journal article, which quotes Rachel.
Egg donors can join the free Facebook community among thousands of egg donors in WAED here.