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The Kids Have Got Rights: Washington Law Requires Medical Info Access for Children of Sperm Donors

by Kilian Melloy
Monday Jul 25, 2011
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Children conceived with donated sperm or eggs provided by fertility clinics in the state of Washington are now officially entitled to know the medical histories of their biological father or mother, as well as the donor’s identity -- unless, that is, the donor has made a point of requesting that no identification ever be provided, a July 22 TIME Magazine article reported.

The issue of donors being contacted by biological children conceived by parents who used their genetic material has become something of a cultural trope, with episodes of popular television series such as "Ally McBeal" and "ER" delving into the subject.

But it was last year’s film "The Kids Are Alright," and the attendant Oscar buzz, that may have done the most to shine a light on a subject that many people may never have thought much about.

For gay and lesbian parents, of course, issues of donated genetic material, surrogacy, and legal complications can cast a shadow of uncertainty on the happy prospect of becoming two dads or two moms. In the film, Julianne Moore and Annette Bening play just such a couple, a longtime same-sex couple whose two children are the result of donated sperm from the same donor. When the couple’s son seeks his biological father, both children soon make an emotional connection with their father, played by Mark Ruffalo, and domestic turmoil ensues.

But the question is more than one of curiosity or a desire to connect with a parent of the opposite gender to that of same-sex parents. For the children of same-sex couples as well as those of heterosexual couples whose birth is the result of donated sperm or eggs, another reason for wanting more information is a need to know about a biological parent’s medical history. As the science of genetics has progressed in recent decades, the issue of a child’s innate medical risks has grown larger: Because the science is now there to understand and asses such risks more completely, children conceived with donated gametes, and their parents also, may well desire to look more deeply into the medical status of a donor.

ABC News reported on July 21 on a story about a young man named Tyler Blackwell who only found out from his biological aunt that the donor who had provided sperm for his own conception -- and those of 23 other children -- suffered from Marfan’s syndrome, a congenital condition that poses a risk of aortic rupture. One of the most famous instances of Marfan’s syndrome was Jonathan Larson, author of the hit play "RENT," who suffered an aortic aneurysm just before the premiere of the play and did not live to see it become the global phenomenon into which it has grown.

"Tyler had a time bomb ticking in his chest," Tyler’s mother told ABC News. "It didn’t occur to anyone to tell us."

Moreover, the donor suffers from Asperger’s syndrome, as does Tyler.

Armed with the new information, doctors identified an repaired a weakness in the teen’s aorta before it could turn into an aneurysm and burst -- a likely eventuality that might have killed him suddenly, just as it killed Larson, actor John Ritter, and actress Lucille Ball.

Tyler’s sperm donor father never told the clinics to which he donated sperm about the condition. But the new Washington law requires that a medical history be made available to clinics and, at age 18, offspring, along with donor identities, although donors may decline to have their identities disclosed.

"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 ABC News article said.

Federal guidelines do little to ensure that potentially lifesaving medical information is transmitted to donor offspring and their families. FDA guidelines stipulate that fertility clinics keep donor information on file for only 10 years, far short of a donor child’s age of legal adulthood.

"There are no rules or regulations about donor identification, testing donors, monitoring numbers of children or medical records," the Donor Sibling Registry’s Wendy Kramer, herself the mother of a son who was conceived with donated sperm, told ABC News.

"No one is watching," added Kramer. "There are no laws. They don’t keep track."

Until now: Kramer was one of the advocates for the new Washington law. Commenting on Tyler Blackwell’s case, Kramer said that his biological father "should never have been a sperm donor. How could such a thing happen in this era of medical advances and an explosion of genomic information about the causes and inheritance of disease, especially in the most medical advanced country in the world?"

Such questions may make some uneasy, suggesting as they do that some individuals are not fit to pass along their genetic material in certain circumstances. But for parents looking for high-quality gametes, it may well be inevitable that such medical questions will become a routine part of the selection process. It is already reportedly the case that parents seeking donor prospects are willing to pay top dollar for eggs and sperm donated by Ivy League students.

Some think a national registry for donors and their resultant offspring would be a good idea to answer not only medical questions, but actual medical needs that might eventually arise.

"Almost everyone agrees that there should be a way to get in touch through the clinic or a confidential intermediary," one lawyer, Mark Demaray, told ABC News. "Egg donors who are in their mid-20s who donate ovums may have kids of their own some day with half siblings. What if her child needs a bone marrow transplant?"

Meantime, professional organization the American Society for Reproductive Medicine (ASRM) has created its own set of guidelines, ABC News reported, but even so, the ASRM is sensitive to the fact that parents using donated genetic material want to feel in control.

"We think that it’s important that parents be allowed to make decisions on how to build their families," Sean Tipton, a spokesperson for the ASRM, said. "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," Tipton added. "You can’t screen for everything."

"We think families and donors ought to be allowed to make decisions in terms of anonymous vs. non-anonymous donation," Tipton told TIME. "We don’t think we know the answer to that question, and we certainly don’t think states know the answer."

The TIME Magazine article noted that donor identities had previously been obscured, with numbers instead of names on the relevant documentation. The new law in Washington requires that fertility clinics in that state keep track of more comprehensive information and supply it on demand to donor children when they come of age.

"Although Washington doesn’t go as far as Sweden, Austria or the United Kingdom, which abolished anonymous donations, it’s still a significant step for many parents of donor-conceived children who yearn to answer that question most kids ask at one time or another: where did I come from?" the TIME Magazine article said.

"The idea of donor anonymity as the rule was an entirely uncontroversial idea," Seattle University professor of law Julie Shapiro told TIME. "Blood and organ donors are anonymous, and we don’t think that’s weird. But there is an emerging sense that it’s a problem for children and it’s a problem for donors. They have regrets."

Others might regret a loss of anonymity.

"Opening up completely is just not going to work," says Theresa Erickson, herself a past donor and now a lawyer who deals with donation issues told TIME. "There are a lot of men and women that just don’t want their information out there."

"Three-quarters of donors at NW Cryobank ask to remain anonymous, and under the law, they’ll still be able to," TIME noted.

But attitudes might be changing. "We think the world is moving toward a place where we have no barriers to personal information," Greg Moga, head of European Sperm Bank USA in Seattle, told TIME. "Look at the Internet, look at Facebook. Everything is discoverable."

One other major issue is that because many donors are young people, whatever health issues they may be at risk for through genetics might be years away from manifesting themselves. For that reason, there’s also a call for fertility clinics -- or any future national registry -- to be required to obtain updated health information from donors on a periodic basis.

"Sperm banks need to make an effort to collect updated medical information every couple of years," Ms. Blackwell, Tyler’s mother, told ABC News. "They made no effort until I came up with a problem. And I don’t think sperm donors should be anonymous. We didn’t get to the truth until his sister called me. It shouldn’t be secret."

Added Ms. Blackwell, "If I could foretell the future, I would have picked a different donor. I didn’t know."

That practical observation glosses over one detail that offspring from donated gametes might find to be crucially important: If prospective parents can reject genetically "imperfect" candidate donors on the basis of health issues that might, or might not, affect their children, the entire tenor of parenthood and reproduction might change. That brings up the specter of eugenics or some variation of "designer" babies.

In that regard, another movie is also relevant to the debate: "Gattaca," a 1997 Ethan Hawke, Uma Thurman, and Jude Law vehicle in which society is divided into a genetically superior upper class and an underclass made up of humanity whose genes are the result of the old-fashioned lottery of romance.

Kilian Melloy serves as EDGE Media Network's Assistant Arts Editor, writing about film, theater, food and drink, and travel, as well as contributing a column. His professional memberships include the National Lesbian & Gay Journalists Association, the Boston Online Film Critics Association, and the Boston Theater Critics Association's Elliot Norton Awards Committee.

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