Sperm Donations Need Better Tracking (Detroit Free Press 5/23/06)

Detroit Free Press
Local Columnists

May 23, 2006
By Paul Dilascia

With more and more women using sperm donors to have children, and donors in short supply, some donors have "fathered" large numbers of offspring. Exactly how many is hard to know, but combining public statistics and my own data, I estimate the average donor could have 25 kids, and some donors many more. America needs to have a better understanding of its gene pool, and that can only happen if donors -- and the babies they produce -- are tracked.

Across the country, about 2,800 unique men have donated sperm over the past three years; I know, because I've collected the names and information from clinics for my Web site, SpermCenter.com, so women and couples could search a national registry for traits they're seeking, such as eye and hair color, blood type or ancestry.

But nobody knows for sure how many children have been born from donations, because nobody's counting. Most media report 30,000 sperm donor babies born each year, but that number is 20 years old. At least one sperm bank claims today's number is 50,000. That all suggests each donor "sires" 20-30 children, with the most popular donors responsible for 60 or more.

There's no federal law limiting donor offspring. Some banks limit births indirectly, by limiting the amount of semen collected. The American Society for Reproductive Medicine publishes guidelines on limiting donor offspring, but they're nothing if not vague.

But there are medical reasons to limit offspring. One -- limiting the spread of genetic disorders -- was spotlighted last week when five children born of sperm donated to a Birmingham bank were revealed to have a rare genetic disorder. Another: The more children a donor has, the greater the chances they might unwittingly meet and mate -- though in a country this size, odds are not great. The Netherlands limits donors to 25 offspring. In England, 10; in France, five. Only the Dutch number is based on scientific study. If we scaled that to our larger population, we'd allow 465 kids per donor. So the dozens of kids coming from single donors still leave the chance of inbreeding in the United States reassuringly slim. But with so much unknown, it would be hard to prevent.

Besides, the idea of 60 children makes many people cringe -- and raises the specter of eugenics. This is driven by a market that allows potential parents to seek attractive traits. If you want PhD sperm, expect to pay more. Whites and Asians are overrepresented relative to blacks and Hispanics. No doubt these preferences reflect the colors of the consumers, who tend to be more affluent. But does that entitle them to greater influence on the genome?

The ethical debate will rage for years. Meanwhile, we urgently need something much more practical and mundane: better tracking. Currently there is none. The FDA regulates sperm as a biologic substance, but concerns itself primarily with preventing disease, not counting babies. The CDC tracks procedures that use eggs, but not donor insemination.

I'm not a fan of regulation; I believe in free markets. But they operate best in total transparency. The sperm industry needs to come out of the dark on the issue of offspring. We need 100% reporting of pregnancies. We need a national donor baby registry that tracks births anonymously, where any woman could learn how many children a particular donor has produced, and in what cities.

Transparency benefits everyone. Consumers would gain information to make better choices.
Sperm banks would learn more about their customers. Society at large would feel more comfortable knowing what's happening.

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Commentary at:
http://di-dad.blogspot.com/2006/05/tracking-sperm-donors-pregnancies.html

Giving Life: Donor Dads Reach Out to Kids (5/21 Detroit Free Press)

After giving sperm, some men are inviting offspring to find them

By Tamara Audi
Detroit Free Press
May 21, 2006

First of a two-part series.

Kirk Maxey is a practical man, a scientist, and so he can calmly explain that, according to his own statistical analysis, he may have as many as 400 children.

For 15 years, Maxey, a medical doctor who runs a chemical research company in Ann Arbor, donated sperm twice a week to sperm banks.

His calculations, rows of long numbers on a yellow sticky note fastened to his computer, show he has donated 172,920,000,000 spermatazoa split into 2,161 vials. Using a 20% success rate, that equals 432 births.

Now 50, with four children of his own, Maxey finds himself thinking about what became of the others. "As you get older, it begins to weigh on you," he said. "What I would like to know is the biological outcomes for my own peace of mind. ... Did we have a champion lacrosse player? Or did we have someone who is mentally damaged?"

Maxey, who has hired a lawyer to explore his legal options, is among a growing minority of sperm donors who have taken the bold, uncommon step of making themselves available for contact with the families of these children. At least three of these men live in Ann Arbor. They include pediatrician Matthew Niedner, 34, who is gingerly establishing relationships with the mothers of three children in San Diego, and a 66-year-old donor named Jim, a lawyer who is leaving behind clues on an online registry so children conceived from his sperm might find him.
Their decisions, made for varying reasons, have opened a window on the motivations of a little-known group of men and reveal practices of an industry that is largely unregulated and relies on confidentiality for much of its success.

"These donors were promised anonymity, but a lot of donors are saying, 'We weren't given any choice,' " said Wendy Kramer, founder of the Donor Sibling Registry, a Web site that helps half siblings meet one another and their biological fathers. "They're in their 30s and 40s ... and have kids, or have never had families, and they're becoming curious."

As sperm donation becomes more common and commercialized, its success has raised a host of ethical, medical, emotional and financial questions -- from children who may demand to know their biological fathers, to questions about how many children should come from a single donor.
Demand for donors growing

Industry officials estimate that 30,000 babies a year are born from sperm bank donors. Some estimate that the average donor has produced 20 children, though precise numbers are elusive since mothers don't have to report births.

According to SpermCenter.com, a Web service that compiles a donor database, there are close to 1,600 men currently donating sperm at 25 banks nationwide. That figure does not count freelancers who advertise directly to women and families online.

There is no shortage of willing donors -- particularly college-age men. But the number of bank donors has risen only slightly over the years because many fail to meet the banks' stringent physical requirements.

While college students are often drawn by the cash -- roughly $45 to $80 per visit, depending on the bank -- donors almost uniformly tell banks they are motivated by the idea of helping people who desire children. Many say they have personally known couples dealing with the pain of infertility.

"I had grown up next to some neighbors who couldn't have children," said Mike, a Michigan donor who didn't want his last name used. "They sort of adopted my sister and myself as aunt and uncle. So later I thought, 'I would like to help couples like that.' "

Niedner -- the tall, dark, handsome doctor from Ann Arbor -- began donating in San Diego after the mother of a young patient remarked, "You should be a sperm donor." Niedner laughed, but the woman pressed, saying she and her husband could not have had a child otherwise.

A few weeks later, Niedner drove to the Fertility Center of California in San Diego, filled out a flurry of medical and personality forms and had his blood and semen screened for disease. Six months later, after he'd passed every test, he became donor 48QAH -- a code conjured by the sperm bank staff, short for Quite A Hunk.

For the next seven years, he stopped at the bank once or twice a week, left a sample in a cup and went home. The $50 per visit was OK, but Niedner said he mostly liked knowing he was helping someone.

This past March, with his wife's support, Niedner revealed his identity in a "60 Minutes" segment on donor-conceived children. Since November, he has exchanged e-mails with three women in San Diego who conceived children with his donated sperm. According to sperm bank records, Niedner's donations have produced nine children so far.

Niedner, who posted his information on the Donor Sibling Registry, said he just wishes to make himself available. "I am open to a mature, friend-type relationship with these kids, if they're even interested," Niedner said.

His decision to go on "60 Minutes" surprised many in the donor community, where anonymity has been the hallmark since banking began in earnest three decades ago.

The success of the registry, the availability of genealogical databases and advances in DNA testing have stirred a national debate on privacy versus openness in the sperm banking community. Some grown children ignore anonymity agreements their parents signed and search for donors. And some donors have circumvented privacy agreements and posted contact information online.

A few banks now offer families the option of using donors willing to be contacted in the future. Others, like International Cryogenics in Birmingham, ban any exchange of identity.

"I think most married couples want that to be a very private thing," said Mary Ann Brown, director of International Cryogenics, Michigan's only major sperm bank. "Our experience has been that 99% do not tell their children" they used a bank.

But in recent years, industry officials say demand for sperm has risen significantly among two groups more likely to be open with their children about how they were conceived -- single women and lesbian couples.

"There's a huge demand, and it's growing," said Paul DiLascia, a technical writer at Microsoft who helped create SpermCenter.com. "The biggest problem sperm banks have is finding sperm donors to meet the need."

As the use of donated sperm grows, Niedner wants the industry to emerge from the shadows, arguing that an independent body should oversee sperm bank practices and verify information about donors. Niedner likens it to the Federal Aviation Administration overseeing airlines.
"If a plane crashes, we don't let American Airlines simply say 'Oh, this is a one in a million thing. It won't happen again,' " he said.

A surprise on television

Kirk Maxey also advocates more accountability, saying banks should be more honest with donors and families about births, background checks and the degree of genetic testing.
Maxey said his own search is not intended to disrupt families. "I think it would be very inappropriate to start inserting yourself into these families," he said, though he added he was open to meeting offspring who want to meet him.

When Maxey donated as a younger man, with his first wife's encouragement, he was wrapped up in the lives of his own young children. As the years passed, his curiosity about his other offspring grew.

One night a few months ago, he was watching an episode of "America's Funniest Home Videos" that featured a chubby-cheeked little boy using a toy drill to explore his nostrils. Maxey stopped cold. Not only did the boy "look like he was out of my baby book," but he was doing something Maxey would have done as a child.

"I thought ... that's one of mine," he said.

Maxey contacted the sperm bank where he made most of his donations to seek information. The bank refused to release information on the children, noting that he had agreed to give up any right to know which families used his sperm. He says he is not after the children's names. He just wants to know how many were born, if they are healthy, or have any special talents or disabilities. "I did not agree never to know if a child was born, never to know anything," he said.
The odds of someone like Maxey producing more than 400 children has given rise to another debate: whether to limit the number of children a donor should have.

The sperm of donor 1368, an extremely popular, 6-foot-1, 175-pound extrovert with hazel eyes, has been banned in Petoskey and five other cities because he has so many children, according to the Minnesota bank marketing his sperm.

Wanting to know more

The man known 25 years ago as donor C411 now says he feels driven to find living proof of his genetic imprint -- assurance that when he dies there will be something left of him.
His name is Jim, he's 66, a lawyer, and reluctant to give his last name because his adopted children do not know he donated sperm 153 times from 1980 to 1982 to the Birmingham bank.
He said he began after learning that his wife, now his ex-wife, could not bear children.
Jim, who also lives in Ann Arbor, said while he loves his adopted children, he donated because he yearned to become "part of the stream of humanity."

He says his family can be traced back to Massachusetts in the 1600s and includes a country doctor, entrepreneurs, ministers and musicians. "I had a good genetic background from my family. ... I thought I had something good to contribute to the gene pool."

He helped his adoptive children, now young adults, learn the identities of their biological parents. He thinks maybe his biological children are ready to meet him.

"Even if they very much love their dad who raised them, they might want information," he said.
So Jim has left clues for the children, by now young adults, to find him: his lawyer bar number and an e-mail address on the Donor Sibling Registry. He checks the e-mail account at least once a week.

So far, it's empty.

Contact TAMARA AUDI at 313-222-6582 or audi@freepress.com.

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Commentary:
http://di-dad.blogspot.com/2006/05/donor-48qah-donor-dads-reaching-out-to.html

Inside The Business Of Egg Donation

From the CBS Evening News:

The 'Right' DNA Can Fetch $35,000, But Women May Not Consider Emotional Risks

NEW BRUNSWICK, N.J., May 17, 2006

(CBS) As college students wrap up the school year, there's a new kind of recruitment under way on campuses. Fertility clinics are offering young women a hefty check for their eggs. As Elizabeth Kaledin reports, it's turning egg donations into a campus industry.

Egg donation is a growing business. Young women make several thousand dollars and couples unable to have children are given a second chance at a family. Although there’s some concern that these young women are not thinking through the emotional risks, the process can also provide them with personal satisfaction.

Like many young college women, Lisa saw ads posted on campus and in the school paper and thought, "Why not?"

When asked if she had any ethical qualms, Lisa replied, "No, not at all."

Lisa has agreed to sell her eggs to infertile couples who hope to have a baby. The price: $7,000. The fertility clinic asked that CBS News not use her last name.

"You really start thinking about the recipient — who's on the other end of this. (That it's) not just a check — that there's people whose lives are changing," Lisa said.

For about three weeks, while studying for finals, Lisa and her doctor carefully tracked the growth of her eggs, which she's stimulated by injecting hormones.

About 75 percent of egg donors these days are college-aged women like Lisa. They're young, have flexible schedules — and can definitely use the extra cash. In fact, you might call egg donation from college women an "emerging market."

"It's a relatively easy way for a 20- or 21-year-old young woman to make what is really quite a lot of money for a relatively short amount of work," says Debora Spar, a professor at the Harvard Business School who has written a book about what's become a growing business.

Spar estimates that egg donation is now a $40 million-a-year industry. Nationwide today, students like Lisa get paid anywhere from $5,000 to $8,000 a cycle. In rare cases where specific attributes — say blue eyes and a high IQ — are the dream, the price can go as high as $35,000.

"It's a bit of a wild west," says Spar. "There's not a lot of law. There's not a lot of regulation, and people can pretty much experiment with these technologies anyway they want as long as they can pay."

The complete lack of regulation has Spar concerned: The medical risks may be low, but the emotional risks are high.

"It isn't just a product like bottled water or potato chips," she says. "People are selling genetic material and hope."

That's where Helane Rosenburg comes in. As the fertility clinic's egg donor coordinator, she makes sure the young women know they're not giving away a baby — and that couples understand there are no guarantees.

"I think people will recruit and pay anything," she says, "but I'm not sure the child is going to turn out any smarter or more beautiful."

She says most people understand the risks — and are just thrilled that people like Lisa are willing to give them a chance at a child.

"If I was in their place and someone could help me," says Lisa, "I would just feel so grateful."

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For my own commentary on the topic discussed in this article please go to:

http://di-dad.blogspot.com/2006/05/inside-business-of-egg-donation.html

Sperm Donor Seen as Source Of Disease In 5 Children

New York Times, Friday, May 19, 2006
By DENISE GRADYBODY:

A sperm donor in Michigan passed a rare and serious genetic disease to five children born to four couples, doctors are reporting today.

The doctor who discovered the cases said that all four couples were clients of the same sperm bank. That bank, the doctor added, assured him that it had discarded its remaining samples from the man and had told him he could no longer be a donor.

It is not known how many children the donor had fathered, whether he knew he carried the disease before he donated sperm, or whether the bank had informed him of his condition after learning about it. The doctor declined to name the sperm bank. A report on the cases is being published today in The Journal of Pediatrics.

An expert in genetics and reproductive medicine who is not associated with the report, Dr. Joe Leigh Simpson at the Baylor College of Medicine, said that sperm donors are routinely tested for most common genetic diseases, like cysticfibrosis and sickle cell anemia, but not for extremely rare ones like severe congenital neutropenia, the one afflicting the Michigan children.

Children with the disease lack a type of white blood cell called aneutrophil, according to the doctor who discovered the cases, Dr. Lawrence A.Boxer, the director of pediatric hematology and oncology at the University ofMichigan, and an author of the report. As a result, the children are highlyvulnerable to infections and prone to leukemia.

Without treatment, many die in childhood. But daily shots of a drug calledNeupogen can help them make the missing cells and fight off infections. It doesnot ward off leukemia, though. The drug costs $200 a day, but, Dr. Boxer said,many get it free as part of a study.

''The kids are doing terrific,'' Dr. Boxer said. ''They're all leading healthy lives.'' But, he added, they have a 50 percent chance of passing the gene and the disease to their own children.

The disease is rare; since Dr. Boxer is an expert on it, families find their way to him, he said. It affects only about one in five million children,and when he encountered three affected families in one year, ''it became pretty striking,'' he said. Then, a fourth family appeared. The families had three sets of twins and one other child from the donor; all told, five children were affected -- the single child, one pair of twins and one twin each from the two other sets.

''The mothers, when initially they brought the children to me, volunteered without my asking how they conceived the kids,'' Dr. Boxer said. To protect theprivacy of his patients Dr. Boxer has not revealed their identities, not even toone another.

He asked where they had obtained the sperm, and if they had cards from the sperm bank that would allow tracing of the donor. All produced cards with thesame donor number.

Genetic testing showed that all the affected children had the exact same version of the defective gene -- and that none of their mothers did. The donorwas the only explanation.

Dr. Boxer called the sperm bank and requested one of the donor's samples for testing but, he said, the sperm bank refused, saying the donor had given permission for the sperm to be used only for conception, not genetic testing.Nor would the bank contact the donor to ask for his cooperation, Dr. Boxer said.

''They were fearful, I'm sure, of litigation, though nobody spoke about that,'' Dr. Boxer said. ''The less that was unraveled here the better off theywere going to be.''

Dr. Boxer said that while he had no information about the donor, he and his colleagues suspected that the man had an unusual condition, mosaicism, in which the mutant gene occurred only in his sperm and not in the rest of his body.

Otherwise, Dr. Boxer said, the donor would have been extremely ill. The sperm bank said he had been healthy. If he did have mosaicism, he would have had no symptoms and there would have been no reason to test him.

Dr. Simpson of Baylor University said he had not heard of a case like this before, but added: ''It's not surprising. You have the same risks in sperm donors as when children are naturally conceived. It's not unique to the sperm donor situation.''

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http://di-dad.blogspot.com/2006/05/donor-passes-disease-onto-5-donor.html

Justices Shy Away From Gay Parent's Case

By GINA HOLLAND
The Associated Press

Monday, May 15, 2006; 7:16 PM

WASHINGTON -- The Supreme Court said Monday it would not block a lesbian from seeking parental rights to a child she helped raise with her longtime partner.

The justices have never before dealt with the rights of gays in child custody disputes, although state courts are handling a growing number of legal fights.

The court had been asked to review a ruling of Washington state's highest court that said Sue Ellen "Mian" Carvin could pursue ties to the girl as a "de facto parent." Justices declined to take up the case.

Carvin's former partner, Page Britain, claimed that as the biological mother she has a constitutional right to make decisions affecting the girl, now 11.

"This is an issue that the Supreme Court is going to hear at some time in the future," said Jordan Lorence, one of Britain's lawyers who works for the conservative Alliance Defense Fund.

Carvin and Britain had lived together for five years before they decided to become parents. Britain was artificially inseminated and gave birth in 1995 to the daughter, known as L.B. in court papers. The girl called Carvin "Mama" and Britain "Mommy."

Britain broke up with Carvin in 2001 and the following year, when the girl was 7, barred her former partner from seeing the girl. After Carvin went to court, Britain married the sperm donor, who now lives in Thailand. Britain and the child are with him for an extended visit and could make the country their permanent home, lawyers said.

The case paints a nasty battle between the two women. Britain says she wanted to have the girl baptized in a Catholic church and that her former partner wanted to take L.B. to a Buddhist temple. Carvin contends she was the active parent while Britain focused on her job.

Carvin and her lawyers said they were pleased that the justices did not disturb last fall's Washington state court ruling, which said even though Carvin was not the girl's natural or adoptive mother, she may have been a "de facto parent." That is someone who, though not legally recognized, functions as a child's actual parent.

"Symbolically it is definitely an important decision, acknowledging that families are changing," said Nancy Sapiro, a senior attorney with the Northwest Women's Law Center and one of Carvin's lawyers.

Carvin said in a statement that she was "thrilled that the United States Supreme Court decided not to review this case and that the Washington State Supreme Court decision will stand."

Despite her court victory, the case could soon end.

Kristen Waggoner of Seattle, one of the lawyers for Britain, said the two sides have reached an agreement that could be final in a few weeks. She refused to disclose the details.

Carvin's attorneys said there was no final settlement.

Eighteen states recognize "de facto parents" over the objections of fit biological parents, according to Britain's lawyers: Arizona, Arkansas, California, Colorado, Indiana, Kentucky, Maine, Maryland, Massachusetts, Minnesota, New Jersey, New Mexico, Pennsylvania, Rhode Island, Utah, West Virginia, Washington and Wisconsin.

"This is becoming a huge can of worms when courts do not follow the more conventional lines of parental rights," Lorence said.

Nancy Polikoff, who teaches family law at American University, said: "As lesbian and gay couples more frequently raise children together, breakups of those families are more likely to happen and there will be more disputes. Courts will have to deal with it."

The case is Britain v. Carvin, 05-974.
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On the Net:
Supreme Court: http://www.supremecourtus.gov/

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Commentary:
http://di-dad.blogspot.com/2006/05/de-facto-parent-justices-shy-away-from.html

Disclosing the origins of life : Editorial Calling for Gamete Registry

Disclosing the origins of life

Published May 12, 2006

The Tribune's readers recently were treated to an update on Donor 401, the anonymous sperm donor who has sired at least 25 children around the country. According to a story that first appeared in the Washington Post, 401 is of German extraction, had a warm relationship with his mother and tans well. These traits apparently made his seed a hot commodity at the Fairfax Cryobank in Virginia.

Some women who bore his biological children met on a Web site; others came forward as their story received national publicity.

For all they know, those children may have countless other siblings. After all, the offspring of anonymous sperm and egg donors don't usually find out about one another.

And there's the rub.

Most donors--often they're college students who need money--demand anonymity. And most consumers of other people's genetic material prefer it that way. Protected by a cloak of privacy and by the utter lack of regulation in the area of assisted reproduction, donors can sire dozens--even hundreds--of babies.

One man, now in his 60s, told Tribune reporter Judith Graham last year that he had spent 16 years supplementing his income by selling his sperm. What's wrong with this picture? Human beings have a right and a need to know their biological history. They should know if one of their parents has a heart problem or carries a defective gene. And they should know if their intended mate shares their DNA. Incest is not just a grave taboo in many religions; it's also ill-advised for health reasons.

The solution is obvious: a centralized registry of gamete (sperm and egg) and embryo donors containing medical and genetic information.

The registry could be set up in a way that allows donors to remain anonymous. Only if all sides agreed would identifying information be disclosed.

This is not something that can be done overnight. A host of questions will need to be worked through by all the stakeholders, including what information should be reported, who should be responsible for maintaining it and how its privacy could be protected.

In the meantime, the American Society for Reproductive Medicine could issue practice guidelines, and fertility clinics could voluntarily maintain some basic biological and genetic information about the donors and keep track of the patients whose babies carry the donor genes. Many are already doing so, but Nanette Elster, an expert in reproductive law, says it would help if they all collected the same information and stored it in the same format.

"We need to think for the future," said Elster, a scholar at Chicago's Institute on Biotechnology and the Human Future who says her 3-year-old daughter is the "gift" of an anonymous sperm donor. "We need to think about the kids, and the kids' kids."

Copyright © 2006, Chicago Tribune

http://di-dad.blogspot.com/2006/05/chicago-tribune-editorial-calling-for.html

Ads urge parents to tell children of sperm bank origins

By Carol NaderMay 12, 2006
TheAge.Com.Au

PARENTS of children conceived with donor sperm will be urged by health authorities to tell their children about their origins, in ads to start appearing in newspapers this weekend.

The State Government has decided against changing legislation that will let sperm and egg donors initiate contact with their biological children, despite warnings that it could leave children traumatised.

The full impact of this law will be felt from July, when the first children affected turn 18. About 100 children covered by the law will turn 18 this year, and there are 3000 others on the register.

A donor wanting to contact the child can apply to the Infertility Treatment Authority. The child will get a letter saying their donor wants to meet them, asking for consent and offering counselling. But only a third of donor-sperm children are told by parents of their origins, leading to fears that an unexpected letter could traumatise the child.

The law affects children born after July 1, 1988. Children can also initiate contact, but the Victorian Law Reform Commission has recommended that donors should not be able to do so.
The "Time to Tell" advertising campaign explains that children over 18 and donors will gain the right, with mutual consent, to seek identifying information about each other. More detailed brochures say everyone has the right to know of their background. "Tell your children even if they are too young to fully understand," the brochures say. "Secrets in families can undermine the trust and stability of family relationships."

The authority also says telling is important for medical reasons relating to inherited diseases.
Chief executive Louise Johnson said the authority knew that it could be hard for parents to find the right words or right time but government-funded counselling was available. She expected "a small number" of donors to apply for information.

"I think the compelling thing is that young people who have been donor-conceived who are now adults passionately believe that it's important to know about where they came from, even though that journey might be a tough one," she said.

Melbourne IVF director John McBain has lobbied Health Minister Bronwyn Pike against allowing this to happen. Dr McBain believes parents should tell their children, but does not believe they should be forced to.

"You cannot go around telling people what to do with their children," he said.

Dr McBain said he welcomed phone calls from parents worried about the changes, but he would also suggest they call the minister's office. He believes the changes could destroy lives. "I don't think there is any sensitive way that the (authority) can write to a newly turned 18-year-old child and say, 'I'm from the Government, we would like to offer you counselling because your donor would like to meet you.' "

Donor Conception Support Group secretary Leonie Hewitt said ensuring publicity before letters went out would give people the chance to deal with the issue first.