Sperm Donor's 24 Kids Never Told About Fatal Illness

Washington is first to give donor offspring rights to medical records.

ByABC News
July 20, 2011, 11:01 AM

July 21, 2011— -- Rebecca Blackwell and her 15-year-old son Tyler were curious about his sperm donor father, whose identity had been anonymous since the moment of conception. Through good detective work, they were eventually able to find "John" three years ago.

What they didn't expect to learn was that Tyler had inherited his father's medical condition -- a rare aortic heart defect that could have killed him at any moment.

Tyler's father never responded to their letter to make contact, but just last year, John's sister found the Blackwells online building on family tree and immediately told them that John had nearly died when his aorta ruptured at the age of 43, and two brothers and Tyler's grandmother had the genetic disorder.

John, who has a family history of the connective tissue disorder Marfan's syndrome as well as the genetic heart defect, had never notified any of the three sperm banks where he had fathered at least 24 children -- 50 percent of whom could be affected.

"Tyler had a time bomb ticking in his chest," said Blackwell, a 59-year-old special education teacher and single mother from Frederick, Md. "It didn't occur to anyone to tell us."

Tyler, now 18, had surgery in June after doctors found a defect in his aorta, but Blackwell wonders why the fertility clinic was never required to update them on John's medical history when so many lives were in the balance.

But Friday, Washington will be the first state to grant rights to donor-conceived people to gain access to crucial health information about their biological parents.

A new law requires donors to provide, "at a minimum," identifying information and medical history to the fertility clinic. And their offspring can seek them out when they are 18, unless the donor has signed an affidavit of nondisclosure.

Until now, offspring were not entitled to any information about their donor and medical information was rarely updated or shared among donors and recipient families. The law is not perfect, say advocates, but the new law opens the door to national recognition of rights for these children.

Exact numbers are not known, but experts speculate that there are about 1 million donor-conceived children in the United States, according to a 2003 report in the journal Nature.

The fertility industry in the United States is one of the least-regulated among developed nations, according to Wendy Kramer, co-founder of the Donor Sibling Registry, a web-based organization that has helped match more than 8,400 donor offspring with their half siblings and/or donors.

"There are no rules or regulations about donor identification, testing donors, monitoring numbers of children or medical records," said Kramer, who conceived her son through sperm donation. "No one is watching. There are no laws. They don't keep track."

Food and Drug Administration guidelines indicate that donated sperm cannot have any "relevant communicable disease or agent," but there is no limit on how many donations can be made by one person nor is there any sharing of medical information between the donor and the child's family.

The American Society for Reproductive Medicine (ASRM) has 15 pages of guidelines for gamete donation.

"Donors should be healthy and give no history to suggest hereditary diseases," the guidelines say. "Some institutions offer chromosomal analysis on all donors, but it is not required."

Although the FDA only mandates that clinics keep records for 10 years, ASRM recommends that record-keeping be permanent. Those that don't are "removed from our membership," said ASRM spokesman Sean Tipton.

But Tipton said that the state shouldn't "change the rules in the middle of the game."

"We think that it's important that parents be allowed to make decisions on how to build their families," he said. "I don't think there's a way to make human reproduction perfect."

"It's unfortunate that anyone who has ever developed a disease or disorder, but they will and all you can do is use the best and most practical screening available at the time of donation," he said. "You can't screen for everything."