Donor Conception in the Spotlight
With the advent of at-home DNA tests, anonymity is no longer possible. What are the implications for those it impacts most?
Cassandra Adams, a stay-at-home mom, artist, and advocate from New Jersey, was always interested in learning more about her heritage. "I loved genealogy from a very young age and was always asking questions about our family history, cultures, and language," Adams said. "I was the family historian — my Italian grandfather would pull me aside to tell me all his stories."
In 2017, when she took an at-home DNA test as part of a volunteer research study, she was shocked at the unexpected results. Instead of the usual paternal mix of British, Dutch and French, her results came back half Italian, as expected on her mother's side, but also half Ashkenazi Jewish. She confronted her mother that day and discovered she was conceived via anonymous sperm donation.
Her world forever changed.
"I was able to find my biological father very quickly, through my DNA match and clues my mother had, even though he was anonymous and there were no records kept," she shares in her story for Right To Know. This organization supports people impacted by surprise DNA discoveries, genetic identity issues, and misattributed parenting experiences.
"I was spending a lot of time processing my discovery with people in online support groups,"
Adams found herself an unexpected advocate in the MPE (misattributed parenting experience), NPE (non-parent expected), and donor-conceived communities. She moderates groups online for donor-conceived people and supports organizations like the U.S. Donor Conceived Council, Right to Know, Hiraeth Hope and Healing, and more.
"It found its way to me," she says about her advocacy. "I was spending a lot of time processing my discovery with people in online support groups, writing more and more, and trying to explain what was happening to me to people who didn't understand."
"Then, finally, people seemed to resonate with what I was writing, and I started to find bits of healing in helping others, advocating for what we as donor-conceived people — particularly late discovery —needed, and figuring out how to turn some of my grief and trauma into something tangible that could help others," said Adams.
Donor Conception Reaches Mainstream Media
From Netflix's popular "Our Father" documentary, which tells the true story of a fertility doctor who used his sperm to impregnate patients, to "The Baby Business," a special report by CNN that covers the fertility industry, the topic of donor conception is making headlines.
For decades, donors of eggs or sperm were guaranteed that they could remain anonymous. But, with the accessibility of at-home DNA testing, anonymity hasn't been possible for years.
"Most people do not realize how unregulated the fertility industry is and fraud, misrepresentations and negligence occur more than you think," said Kara Rubinstein Deyerin, CEO of Right To Know.
"Donor Deceived tracks fraud cases in fertility. Your nail salon has more regulations. We are making humans; one instance of fraud is one too many. This is a business, and the nature of business is always to improve profits," she said.
But, with the accessibility of at-home DNA testing, anonymity hasn't been possible for years.
"According to the Market Research Future (MRFR) report, the global fertility services market will reach $36 billion next year," she continued. "The focus has been on the goal of parents having a child but not on the impact on that child. Our understanding of the impacts of assisted reproduction on the children we are creating is growing, and there will be a shift toward transparency and strict regulation."
The shift that Rubinstein Deyerin is referring to is slowly happening. The children conceived when the fertility industry was focused on anonymity are now adults, and media outlets across the nation are asking hard questions including, "what do the donor-conceived have a right to know?"
"There is no such thing as anonymity anymore," Rubinstein Deyerin said. "When reaching out to genetic family, people who make have an MPE [misattributed parent experience] often have three goals. First, to obtain an accurate medical history. Not knowing half of your medical history has real-life and death consequences."
"The second is to understand who they are and where they come from … I hope that anyone contacted by someone with a DNA surprise takes the time to at least assist with these two goals. Regardless of how you saw your gamete provision at the time, you made a child, and you at least owe them a duty of care by providing them with this information," she said.
"Some people may also want a relationship with their new genetic family," Rubinstein Deyerin added. "This should be up to all involved. But, again, taking it slowly is the best advice."
The issue isn't just about those who are donor conceived needing information, but about those who choose to donate not being adequately informed too, according to Wendy Kramer, director, and co-founder of the Donor Sibling Registry, a global registry with a mission of connecting, educating, and supporting all those in the donor family.
The 501(c)3 nonprofit organization facilitates mutual-consent contact among donors, recipients, and offspring so that they can share important medical information and explore new relationships.
Kramer references her article "10 Things Your Doctor, Clinic, or Sperm Bank Won't Tell You" to point out some of the industry's issues. Highlights from her research include:
- A lack of education and transparency for those who donate genetic material
- A lack of testing for medical issues
- No regulated record keeping
- Donor-conceived people's innate desire to know their genetic relatives
- The danger of keeping secrets, among other topics
Kramer's work in the realm of donor conception is personal. "I was married, and my husband was infertile," she said. "My donor-conceived son [Ryan] wanted to know if he had any half-siblings and if his biological father might be open to connecting."
"The sperm bank and clinic offered no help, so we took matters into our own hands," Kramer said. "I always thought that because I had brought my son into this world with this set of circumstances, it was, therefore, my responsibility to help him get the answers to his questions about his ancestry, medical background, and close genetic relatives."
Since its inception in 2000, the Donor Sibling Registry has helped to connect more than 23,000 of its 81,000 members with their first- and second-degree genetic relatives. Ryan Kramer, Wendy's son, co-founded the organization with her.
An Attempt At Regulation
"The fertility industry in the U.S. needs regulations to align us with the rest of the world," said Rubinstein Deyerin. "Technology often moves faster than legislation."
To make sense of an unregulated industry, many organizations and lawmakers are introducing legislation that would make an impact. For example, on a national level, one federal legislation that was recently introduced would require donors of sperm and eggs to provide mandatory medical information.
While regulation is a step in the right direction, experts and advocates in the donor-conceived space agree there is a long way to go.
In Colorado, a law will end anonymous sperm and egg donation in 2025. A similar bill is under consideration in New York. While regulation is a step in the right direction, experts and advocates in the donor-conceived space agree there is a long way to go.
"The future of donor conception should look like known donors," Adams said. "People willing to be involved, willing to be known, known to the family. Expanding the definition of family is what is most progressive."
"Suppose the donor-conceived person is never given the space, and the room isn't left for everyone who helped create them," Adams continued. "In that case, the person isn't given the autonomy and agency of making their own choices regarding how they define their relationships. Donor conceived people should not be separated from their cultures intentionally."
For those who have discovered that they are donor-conceived or have a misattributed parenting experience, resources are out there to help.