Many of those who donated eggs and sperm did so in the expectation of a lasting anonymity. They didn't want unknown offspring to one day knock on their door.
But in the Internet age, the expectation or anonymity is increasingly diminished. Several websites, such as donorsiblingregistry.com and 23andme.com, enable those who share the same DNA to connect with one another. Through those websites and other Internet searches, thousands of people have been able to circumvent the anonymity offered by sperm banks and fertility clinics to identify biological parents, half-siblings or cousins.
If there is more regulation in assisted reproduction, it will probably come from those who have gone through the process or were the result of it.
That is what happened in Utah. The sponsor of the bill, Republican Rep. Dixon Pitcher, was buttonholed by an old friend who in her late 60s learned that the beloved, now-deceased man who raised her was not her biological father. The truth unraveled after a nephew with health problems underwent DNA testing.
"It was devastating," she said. "I think I cried for about three months." The woman, who asked that she only be identified as "Marie" to avoid embarrassing others, said she has since learned of eight half-siblings, some of whom she has now met.
Through the DNA research and other clues, Marie said that it became clear that the father of all of them was her mother's doctor. Geneticists say that prior to modern fertility technology, doctors of women with infertile husbands often provided the sperm that enabled their patients to conceive.
Marie said she had hoped Pitcher's bill would enable donor-conceived children to learn the identities of their biological parents, but she is pleased that at least some medical information will be made available as a result of the new law.
Other people also are clamoring for information about their donations or their biological parents.
Katie Graves of northern Virginia, for instance, said that 17 years ago, she underwent egg retrievals four times, and was paid about $3,000 each time. Later, she said, she was unable to learn from the clinic the dosages of hormones and medications that had been used in her case. And she said she was denied any information about whether her donation had resulted in any births. Through a DNA matching website, she learned in January that she had a 16-year-old biological daughter.
Martin Garrison made donations to a sperm bank that was recruiting students at UCLA when he was a student there in the 1980s. He made $500 a month for making three donations a week. "It was work you could do that wasn't painful," he said. When he tried later to learn how many children he had fathered as a result of his donations, he kept getting different answers, ranging from one to 10 children. He said the bank never contacted him to ask him for a medical update.
Lisa Swanson, a lawyer, learned at age 30 that she was donor-conceived. When she tried to learn about her biological father, she ran into a dead-end with the clinic that arranged her conception.
"They told me all the records had been destroyed," she said. "They also said they had no idea how to reach the doctor."
"I know nothing about half of my genetic health information," she said. More should be required of the industry, she said. Physicians "are creating human beings but destroying our ability to know where we came from."
Stateline, Copyright © 1996-2015 The Pew Charitable Trusts. All rights reserved.
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