Sperm, egg donation facing decreased anonymity due to DNA testing, social media

RALEIGH, North Carolina -- When the Donor Sibling Registry (DSR) was founded in 2000, Wendy Kramer and her son Ryan were simply hoping to make Ryan available to connect with his biological dad who donated the sperm used to conceive him. Fast forward to 2018, Ryan did connect with his biological father as well as 10 biological siblings (and counting) and the DSR has done the same for 15,557 others.

"Every single day we connect usually between two and five people," explained Wendy Kramer. "We've connected people in 105 countries around the world," Kramer said.

Sites like the DSR, GEDmatch.com, and DNA testing have changed the sperm and egg donor industries, making it increasingly more difficult to keep donors' identities anonymous. Kramer is pushing lawmakers and clinics to better educate parents and donors to let them know the days of anonymity are gone.

"At this point, nobody should be promised anonymity," Kramer said. "There are no egg clinics or sperm banks that should have anything called anonymous donors. That's a thing of the past."

At Carolina Conceptions in Raleigh, North Carolina its program remains anonymous. However, the organization makes it clear with donors that it is a challenge to keep identities protected due to DNA testing and social media.

"We say this is an anonymous program for all our intents and purposes," explained Ellie Downs, an RN and Carolina Conceptions donor egg coordinator. "It's going to remain that way, however, we cannot control what happens to the information."

Kramer is hoping it becomes more commonplace for clinics or sperm banks to give donors or parents the information about the Donor Sibling Registry from the start.

"There are about two dozen egg clinics and agencies that write the Donor Sibling Registry right into the contracts," Kramer said. "When women are pregnant or children are babies, the donors connect on the Donor Sibling Registries, so right from the beginning they have access to each other to share and update medical information or photos or messages," she said.

The DSR has more than 59,000 members worldwide.