For all of human history, we have been driven by a desire to know where we come from. This quest for knowledge was the inspiration behind the Donor Sibling Registry.
Created in 2000, the Donor Sibling Registry (DSR) — as described by co-founder and director Wendy Kramer — is a vehicle through which sperm and egg donors, parents, and donor-conceived people, can find and communicate with their own or their child’s biological families. And all of this can be done privately, allowing users to connect and develop relationships at their own speed.
“When we started DSR, it was the first time these people understood they had the right to be curious, the right to search for, and the right to find these genetic relatives,” Kramer said. “And they also had the right to define their relationships with these genetic relatives.”
The DSR is the only registry of its kind, and to date contains 73,000 donors, parents, and donor-conceived children from 105 countries, and has connected more than 20,250 people.
As commercial DNA testing companies like AncestryDNA and 23andMe have exploded in popularity over the past decade, so too have the number of donor-conceived people looking to connect with their biological parents and half siblings. That’s where the DSR comes in.
“Ninety-nine percent of people just find us,” Kramer said. “They’re donors who are curious: ‘Hey, did I have any kids? I would love to know who they are!’ Or there are parents who are curious about their kids’ half siblings. And then there are donor-conceived adults curious about who their genetic relatives are.”
In addition to satisfying curiosity and helping ease people’s social and psychological distress related to learning where half their DNA comes from, there are major advantages to sharing and learning about family medical history.
Many diseases and conditions are genetic in origin, and can be better screened, diagnosed, and treated if care providers know their patients’ full family medical history. However, as Kramer explains, sperm and egg donation centers will rarely work to seek full histories from their donors or follow up with them to see if health records change.
“Most of these donors are just college kids and money is the main motivator; sometimes these donors will just say what they need to say so they’ll get accepted into the donor program,” Kramer said. “Some people get a snapshot of one day in the life of a healthy young donor, but they don’t know what happens the next year or five years.”
In fact, Kramer says that one DSR survey of 164 egg donors found that 97 percent were never contacted for a medical update, despite the fact that nearly one-third indicated that either they or a close family member had developed a medical condition their biological children should know about.
In addition to the people who seek out the DSR on their own, about two dozen egg clinics and agencies now include DSR registration in their contracts and consent forms. This automatically creates a path for donors and their recipient families to find each other and connect (as privately as they like) when they’re ready. To date, no sperm banks have taken this important step forward.
Kramer hopes this practice becomes more common, and that transparency about infertility treatments, sperm and egg donations, and the biological ties between donors and their offspring increases.
“The donor industry as a whole works so hard to put this false sense of anonymity out there,” Kramer said. “They put this fear on donors that parents are going to disrupt their lives, so they can’t know them. They put this fear on parents that donors are going to want to be parents to their children.”
“Meanwhile, in reality, we know when these connections happen right from the get-go, people are 100 percent respectful of boundaries, and meaningful relationships can be formed and family expanded. A lot of the work we do is pulling the plug on all of that kind of negative influence to say, ‘You have every right to be curious, to search for, to find, and then define these new relationships with your close genetic relatives.’”To learn more about the DSR, visit donorsiblingregistry.com.