Woman hopes for more regulation, protection for donor-conceived people

Woman hopes for more regulation, protection for donor-conceived people

There is a single piece of artwork on Sarah Moffett’s apartment wall that shows blue and red symbols with information about what could be her family tree.

“I can’t quite figure it out yet,” she said. “But it’s hours and hours and hours of research.”

The Madison native was conceived in the 1980’s with the help of University of Wisconsin doctors and a sperm donor.

As she thinks about starting her own family, she’s been trying for the last 13 years, off and on, to learn about her biological father, only to be told by UW Health that he was promised confidentiality at the time and that the medical facility plans to honor that promise. She figures there have to be hundreds, if not thousands, of people like her whose parents came to the Madison clinic to create a family.

“I feel like everybody has a right to know where they come from,” she said. “If he was sick, if he was carrying a genetic disease, I feel like I should know about that. Otherwise, it’s like a crap shoot. What could I have that I’d pass on to my kids? I have no idea.”

A spokeswoman for UW Health expressed sympathy, but said both donors and the couples who wanted to start a family knew what the protocol was when they entered willingly into the process.

“These (confidentiality) promises were made routinely to all donors,” wrote Lisa Brunette in an email to News 3. “In addition, recipients signed consent forms attesting that they would not be able to obtain the identity of the donor. This indicates that the confidentiality of donor identity was a prime consideration.”

The Food and Drug Administration currently requires sperm banks to test for sexually transmitted diseases mostly, but back in the 1980’s, there was a simple question asked of donors and that was to disclose if they were homosexual. There were no tests administered and to advocates for donor-conceived children, it’s unethical for these health care facilities to keep a commitment to everyone but the child conceived.

“There’s no counselor that I know that would counsel keep the secret. Just like with adoption, we know better,” said Wendy Kramer, who runs the Donor Sibling Registry that helps connect families and provides resources around the world. “This industry is so focused on getting people pregnant that once they’re pregnant, they just wash their hands and say, ‘We’re done.’ You’re not done. Pregnancy is just the beginning of the story in these families and (the silence) impacts these kids for decades to come.”

Kramer has launched an FDA petition asking for more regulation and more protections for donor-conceived people.

“The industry says it self-regulates, but when you have a multi-billion dollar industry with no regulation, what could possibly go wrong?” Kramer told News 3 from Paris where she was presenting at an international conference on the issue. “This isn’t just any industry. This is an industry creating human beings.”

Sarah Moffett filed open records requests with UW Health to get any information about her biological father and her requests were largely denied. She sent letters to hundreds of potential donors only to have stacks of returned, unopened envelopes littering her coffee table.

Right now, there are six people on the Donor Sibling registry who believe they were conceived at the University of Wisconsin. Sarah’s hoping by sharing her story, maybe she’ll meet a half-sibling or maybe she’ll meet others who can relate to her situation.

“I’m not looking for a new Dad. I have a Dad,” she said. “He’s the best Dad I could ever ask for. I’m just looking for a part of myself and I’m sure there are lots of people out there doing the same.”