Tuesday, June 06, 2006

As the Use of Donor Sperm Increases, Secrecy Can Be a Health Hazard (NYT 06 June 2006)

Second Opinion

As the Use of Donor Sperm Increases, Secrecy Can Be a Health Hazard

New York Times / Health & Fitness
Published: June 6, 2006

Sperm donor No. F827 aced all the tests. He was healthy, and he said his parents and grandparents were, too. Under a microscope, his chromosomes looked perfect. He also turned out to be quite prolific: his deposits to a Michigan sperm bank during the 1990's produced 11 children.

But he passed a serious gene defect to five of those children, a blood disease that leaves them at risk for leukemia and in need of daily shots of an expensive drug to prevent infections. They also have a 50-50 chance of passing the disease to their children.

Shouldn't the sperm bank have detected the bad gene and rejected the donor?

Geneticists say no, because the disease is extremely rare and sperm banks cannot be expected to test for every possible mutation.

But that bit of uncertainty raises other questions. Should any donor produce so many children, when they will be scattered far and wide, making it harder to recognize a pattern of illness than it would be if they all lived under one roof? It's also worth asking whether damage could be limited by requiring sperm banks to keep track of donors' babies so that if one or more got sick, other families who had used the same donor could be warned, sale of the sperm stopped and the donor notified.

The Michigan case, described last month in The Journal of Pediatrics, could be a warning signal to sperm banks and their customers - or it could be just a fluke, such a weird set of circumstances that it has no bearing on anyone else. It's hard to tell for sure, because the buying and selling of sperm is an intensely private, largely unregulated business. A lot is not known, and many participants want it that way.

Most donors are anonymous, and sperm banks strictly guard their privacy and that of their recipients. Tracking the health of the children that are born as a result is not required, and there are no laws to limit the number of offspring per donor. The Netherlands allows no more than 10, but in the United States that decision is left to individual sperm banks, and they make their own rules. Typically, each sample is divided into multiple vials, and the vials are sold for hundreds of dollars apiece.

News reports and Internet tales abound of sperm donors who claim to have fathered dozens or even more than 100 babies via one or more sperm banks, but the stories are impossible to verify because there is no requirement that sperm-donor births be identified. Many birth parents want to keep the details of conception secret anyway, and might not tell even if they were asked.

Demand for donor sperm is high and getting higher, and includes not only heterosexual couples with fertility or health problems but also lesbian couples and single women who want to have children on their own. The fertility industry estimates that 30,000 births a year result from donated sperm, but the real number is not known.

Birth parents of some of those children have begun questioning sperm bank practices, particularly the anonymity of donors and the extensive use of some of them. Some older children want to know who their biological fathers are, and some parents fear that their sons and daughters could one day unknowingly meet up with half siblings, commit incest and have babies with genetic problems as a result.

Still, sperm banking seems to have a good track record, at least as far as anybody can tell. Donors are tested repeatedly for H.I.V., hepatitis and other infections. As for genetic disorders, there have been few other published reports of problems traced back to donors. The known cases include a donor in California who passed on a hereditary kidney disease and one in the Netherlands who fathered 18 children and was later found to have a serious neurological disease that his offspring have a 50-50 chance of inheriting.

The Food and Drug Administration has tissue-banking rules that apply to sperm banks, but those rules concern infectious diseases rather than genetics, and do not limit the number of pregnancies per donor or require tracking of the children's health. A trade group, the American Association of Tissue Banks, accredits sperm banks that meet its standards, but few banks participate in the program.

The Michigan cases came to light only because all four families with sick children happened to consult the same specialist at the University of Michigan, Dr. Laurence A. Boxer. The disorder, severe congenital neutropenia, is so rare - it affects only one child in five million - that when Dr. Boxer suddenly saw several cases in one year he suspected that something strange was going on.

All the parents said they had used sperm donors, and when Dr. Boxer asked, all showed him cards bearing the same donor number, F827.

Genetic tests on all five children showed they had identical copies of the defective gene, but none of their mothers had it. That left only the sperm donor. Dr. Boxer and his colleagues suspected that the man probably had an unusual condition, gonadal mosaicism, in which he carried the bad gene only in his sperm cells, and not the rest of his body.

Otherwise, he would have been ill, too. The doctors figured that he probably had no symptoms, and no idea that he carried the mutation.

But they could not prove their theory, because they could not test him or his sperm. He had moved, and the sperm bank, International Cryogenics in Birmingham, Mich., said it could not find him. It offered samples of his sperm for testing, but an ethics panel at the University of Washington, where the genetic analyses were done, said tests could not be done without his permission.

The director of the sperm bank, Mary Ann Brown, said, "We were thoroughly wanting to get to the bottom of this."

The donor's remaining specimens were thrown away, she said, and the bank now takes Social Security numbers and other information to make it easier to find donors who relocate.

International Cryogenics turns away 95 percent of potential donors because their medical histories or their sperm are not good enough, Ms. Brown said; many of those accepted are medical and dental students.

The bank sets a limit of 20 pregnancies per donor, she said, adding that other sperm banks allow more.

The donors are paid $45 for each sample, and the samples are then subdivided, averaging three vials of 20 million motile sperm apiece, with each vial selling for $200 to $250.

When International Cryogenics heard about the problem with its donor, it did not notify other recipients, Ms. Brown said, at first because the company's own genetics consultant questioned Dr. Boxer's findings, and later because the company reasoned that even if other children had developed the disease their families would already know it.

But the company did release the donor number, because when news of the case came out, sperm bank clients began calling to find out if they had been recipients and if their children were at risk.

No sperm bank could have prevented what happened in Michigan, Ms. Brown said. Banks test for the most common genetic disorders, like cystic fibrosis and sickle cell anemia, but not for rare ones like severe congenital neutropenia, because it would require a huge amount of time and money. So the banks and their customers take a bit of a gamble, knowing that odd mutations occur from time to time, but that sperm donors have no more risk of them than men who conceive babies the old-fashioned way.

But sperm donors do differ from most other men in an important way: they can have a lot more children, and father them simultaneously instead of one at a time. Private deals that involve conception might seem like a fine way of doing business to the people who sign the papers, but what suits the grown-ups may not always be in the best interests of the children.

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