NY Times article : In Choosing a Sperm Donor, a Roll of the Genetic Dice

In Choosing a Sperm Donor, a Roll of the Genetic Dice
By JACQUELINE MROZ

Sharine and Brian Kretchmar of Yukon, Okla., tried a number of medical treatments to conceive a second child. After a depressing series of failures, a doctor finally advised them to find a sperm donor.

For more than a year, the Kretchmars carefully researched sperm banks and donors. The donor they chose was a family man, a Christian like them, they were told. Most important, he had a clean bill of health. His sperm was stored at the New England Cryogenic Center in Boston, and according to the laboratory’s Web site, all donors there were tested for various genetic conditions.

So the Kretchmars took a deep breath and jumped in. After artificial insemination, Mrs. Kretchmar became pregnant, and in April 2010 she gave birth to a boy they named Jaxon.

But the baby failed to have a bowel movement in the first day or so after birth, a sign to doctors that something was wrong. Eventually Jaxon was rushed to surgery. Doctors returned with terrible news for the Kretchmars: Their baby appeared to have cystic fibrosis.

“We were pretty much devastated,” said Mrs. Kretchmar, 33, who works as a nurse. “At first, we weren’t convinced it was cystic fibrosis, because we knew the donor had been tested for the disease. We thought it had to be something different.”

But genetic testing showed that Jaxon did carry the genes for cystic fibrosis. Mrs. Kretchmar had no idea she was a carrier, but was shocked to discover that so, too, was the Kretchmars’ donor. His sperm, they would later discover, was decades old, originally donated at a laboratory halfway across the country and frozen ever since. Whether it was properly tested is a matter of dispute.

Sadly, the Kretchmars’ experience is not unique. In households across the country, children conceived with donated sperm are struggling with serious genetic conditions inherited from men they have never met. The illnesses include heart defects, spinal muscular atrophy and neurofibromatosis type 1, among many others.

Hundreds of cases have been documented, but it is likely there are thousands more, according to Wendy Kramer, founder of the Donor Sibling Registry, a Web site she started to help connect families with children who are offspring of the same sperm donor.

Donated eggs pose a risk as well, but the threat of genetic harm from sperm donation is arguably much greater. Sperm donors are no more likely to carry genetic diseases than anybody else, but they can father a far greater number of children: 50, 100 or even 150, each a potential inheritor of flawed genes, and each a vector for making those genes more pervasive in the general population.

The scale of the problem is only now becoming apparent with the advent of online communities like Ms. Kramer’s. “There needs to be oversight, and some regulation of the industry,” she said.It is not known how many children are born each year using sperm donors, because mothers of donor offspring are not required to report their births. By some estimates, there are more than a million children in this country conceived with donated sperm or eggs.

The Food and Drug Administration requires that sperm donors be tested for communicable diseases, but there is no federal requirement that sperm banks screen for genetic diseases. Some of the betters ones do anyway, in accordance with guidelines promulgated by organizations like the American Society for Reproductive Medicine, which encourages sperm banks to test donors for conditions like cystic fibrosis and mental retardation when there is a family history of the disease. Generally, the donor himself is tested, not his sperm.

But compliance with those guidelines is not obligatory, and genetic testing practices vary widely across the United States. Critics of the industry are calling for mandatory and consistent medical and genetic testing of all donors.

“In this day and age, when you have genetic testing available for about $200, there’s no reason sperm banks can’t provide this for clients,” said Ms. Kramer.

The fertility industry, however, has long resisted the idea.
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One Response to NY Times article : In Choosing a Sperm Donor, a Roll of the Genetic Dice

  1. wendykr says:

    May 21, 2012 Letters to the Editor:
    NY Times, Letters
    Sperm Donors and Disease
    Published: May 21, 2012

    To the Editor:

    Re “In Choosing a Sperm Donor, a Roll of the Genetic Dice” (May 15): We are troubled that the rapid adoption of lucrative assisted reproductive technologies has outpaced the scientific and regulatory communities’ ability to monitor the safety of these procedures.

    Sperm banks are barely regulated, and lack of follow-up data on donor-conceived children makes it virtually impossible to gauge long-term health effects. Frozen eggs require the use of ICSI (injecting a single sperm directly into an egg), which is linked to an increased risk of birth defects; additionally, studies report an elevated risk of ovarian cancer in women who have undergone the hormonal stimulation required to “harvest” eggs.

    Consumers must be fully informed of the potential consequences of assisted reproductive technologies, and the F.D.A. should commission rigorous outcome studies and consider stronger regulations rather than allowing the marketplace to drive the use of these technologies.

    Linda Kahn

    Wendy Chavkin, M.D.

    Manhattan

    The writers are researchers in public health at Columbia University.

    To the Editor:

    Although the fertility industry has for many years objected to mandatory genetic testing of sperm donors on the grounds of cost, testing is actually far cheaper than not testing. As your article notes, a basic panel of genetic tests is now available for $200. The lifetime medical cost of caring for a patient with cystic fibrosis can run into the millions of dollars. The difference is that the $200 is being paid by the fertility lab, likely with the charge being passed along to consumers. In contrast, the millions of dollars spent on care for the severely ill or disabled are generally borne by society as a whole, either through increased insurance premiums or taxes.

    Jacob M. Appel, M.D.

    Manhattan

    http://www.nytimes.com/2012/05/22/health/sperm-donors-and-disease-3-letters.html?_r=1

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