By admin on May 16, 2012

In Choosing a Sperm Donor, a Roll of the Genetic Dice

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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By admin on May 09, 2012

The Donor Sibling Registry’s Sperm Donor Special was Emmy nominated for a “Special Class Programming” Emmy!!
To view:

By admin on May 03, 2012

A call by the Donor Sibling Registry to stop using the figures of 30,000 –
60,000 US sperm donor births

08 May 2012

By Wendy Kramer

Wendy Kramer is director of the Donor Sibling Registry
Appeared in BioNews 655

In 1988 the Office of Technology Assessment estimated that 30,000 children were
born via donor insemination during the year 1986/87 in the US (1).

A quarter of a century – and no further research – later, ‘30,000 annual births’
is still trotted out in academia, lectures and the media (2). Sometimes the
number is doubled, probably to allow for the passage of time, and occasionally a
range of 30,000 – 60,000 is deployed.

Yet so much about donor insemination has changed during this time. Using either
of the whole figures is scientifically unjustifiable, and the range is just as

Hence, experts should not be using such patently erroneous figures. Rather, they
should be noting that there is no reliable method of assessing how many children
are conceived via donor insemination each year. They should be pointing out that
the USA has no accurate tracking or record keeping from which it is possible to
make an educated assessment.

Instead of complacently relying on outdated best guesstimate figures from more
than a generation ago, they should be demanding reliable, recent figures. They
should be voicing outrage that neither the fertility industry nor any other
entity is required to collect data or report statistics on the numbers of human
beings conceived using donor sperm. This is in stark contrast with cattle
insemination, which is much more tightly regulated and surveyed.

The donor insemination landscape has changed significantly from the 1988 report.
In 1986 almost all recipients were married; nowadays, married recipients
(excluding lesbian couples) make up a small minority. Whereas in 1986 the
majority of donors were recruited directly by fertility doctors, most donors are
now sperm bank recruits.

The number of sperm banks has rapidly increased since 1988, as has the number of
donors. But the greatest change of all is the opportunity for kinship
acquaintance. In 1988 it was essentially fantasy for donors or offspring to
think they would get to know one another. Now, in the generation following the
advent of the Donor Sibling Registry (DSR), such knowledge is almost an
expectation. Only one thing remains the same: the general lack of genetic
testing of donors or any mandatory requirement to do so.

Over the last twelve years, the DSR has collated the most comprehensive records
that currently exist in the USA. It has records of over 1600 donors, information
about tens of thousands of offspring, and details of hundreds of US sperm
distribution facilities. However, these records are very incomplete, as all have
been obtained via voluntary registration.

For several years, the DSR has been applying pressure to sperm banks for them to
maintain their own records, but progress in that direction is slow. And even if
individual sperm banks did create proper records, in order for them to be
accurate and reliable they would need to be collated and integrated with the
records of every agency that trades sperm. This would require that the whole
industry be accountable to one body.

This is a call to those quoting that one-time estimate of 30,000, and to those
concerned about the pitiful lack of oversight within the US sperm donor
industry, to speak up about the lack of reliable information within the public
domain. We need to demand that federal money be allocated to research and
regulate this industry, and to do it in a thorough and comprehensive manner.

In the meantime, everyone using these figures should acknowledge that they are
25 years out of date, and even then they were only rough guesstimates.

1) Artificial Insemination: Practice in the United States: Summary of a 1987
Office of Technology Assessment | 1988

2) One Sperm Donor, 150 Offspring
NY Times | 05 November 2011