Lost Siblings Connect Online, Shed Light on Fertility Industry

Lost Siblings Connect Online, Shed Light on Fertility Industry

A generation of children conceived using sperm donors is reaching maturity and turning to an Internet website to find extended family, complete with dozens of half-siblings in some cases, as well as their long-lost fathers.

Is This Thing On?, or ITTO, is our Wednesday column showing how everyday people use technology in unexpected ways.

Donor families’ growing reliance on Internet searches to find other offspring from the same donor is shining a light on the long-unregulated infertility industry and prompting families and consumer advocates to push for changes.

No one knows how many children are born in this country each year using sperm donors, because mothers of donor children are only asked to voluntarily report a child’s birth to the sperm bank, and only 20 to 30 percent do so. Some estimates put the number at 30,000 to 60,000, perhaps more, according to the Donor Sibling Registry, a source of information about a child’s half-siblings for increasing numbers of people who aren’t able to find it from traditional sources.

The DSR was created in September 2000 by Wendy Kramer and her son Ryan. The pair were curious about other donor offspring, but found there was no public outlet for people born from anonymous sperm donations to mutually agree to contact each other, so they created the site.

Many parents, Kramer said, are shocked to learn just how many half-siblings a child has. Kramer also said some U.S. sperm banks have treated donor families unethically and that it is time to consider new legislation.

“They think their daughter may have a few siblings, but then they go on our site and find out their daughter actually has 18 brothers and sisters. They’re freaked out,” said Kramer. “I’m amazed that these groups keep growing and growing.”

For example, Cynthia Daily, the mother of a child conceived from a sperm donor, found several siblings on the DSR and then created a separate online group, using the donor’s unique identifying number to gather together to track her son’s half-siblings — children who were created using the same donor.

Amazingly, Daily pinpointed 150 children, all conceived with sperm from that same donor. Daily organizes get-togethers so the half-siblings can meet each other.

In Daily’s case, the connections are positive, but the often staggering numbers that these Internet searches reveal also raises concerns about the potential negative consequences of having many children fathered by the same donor, which include wider and easier spreading of rare diseases and fear of accidental incest.

In fact, the concern over accidental incest is strong enough that many parents go to great lengths to inform their children of their donor status and don’t allow dating other donor-conceived children, just to be safe.

Groups are campaigning to limit the number of children to be produced from one sperm donor, as is the case in European countries where the law restricts offspring from one donor.

In addition to parents and children, sperm donors are also becoming concerned. Many middle-aged men, who were young adults when they donated, are now reporting they were told that probably a maximum of five children may be produced from the donated sperm, and it would be very rare for a donor to have more than 10 children.

These donors are now taking a look at the number of siblings reported under their donor numbers on the DSR and other sites, and the results are shocking to them as well.

DSR founder Kramer said that one sperm donor on her site learned that he had 70 children. He now keeps track of them all on an Excel spreadsheet. “Every once in a while he gets a new kid or twins,” she said. “It’s overwhelming, and not what he signed up for. He was promised low numbers of children.”

The phenomenon is growing to the point that the Style Network created a reality show that aired last month, featuring a meeting between two donor children and their biological father.

Now a Boston lawyer, Ben Seisler was a struggling student at George Mason University Law School in Virginia when he used sperm donation as a way to make some money, about $150 a donation. He was tracked down by the Seattle mother of the two children through the DSR.

“It was kind of wild,” Seisler said of the meeting that was captured for the Style Network’s show. “On the one hand, these kids are biologically my kids. On the other hand, they are not my kids. I didn’t raise them. I have no control over how they are raised.”

Seisler recently married and now lives in upstate New York with his wife, who is reportedly not too happy about the group she calls his “offspring.”

Because there is often so much secrecy surrounding sperm and egg donations, according to Kramer, it has been difficult for families of children born via sperm donation to step forward with their concerns. Some heterosexual couples also never tell a child that he or she is the product of a sperm donation.

“There are no rules or regulations about donor identification, testing donors, monitoring numbers of children or medical records.” Kramer said. “No one is watching. There are no laws. They don’t keep track.”

While the industry, regulators and possibly lawmakers establish stricter guidelines and maybe even transparency laws, families with donor-conceived offspring have some online options to use to generate information, and help advocate for changes they believe are much-needed.

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