By admin on May 28, 2009

A commentary by Wendy Kramer, Director & co-founder, Donor Sibling Registry,
(May 26/09. BioNews)

The Donor Sibling Registry (‘DSR’) is a non-profit, web-based, worldwide
organisation dedicated to educating, connecting and supporting those
affected by gamete donation, including donors, recipients and offspring. At
25,000 members, the DSR has connected 7,000 genetic first degree relatives;
hundreds of donors enjoy contact with offspring and thousands of
half-siblings interact together.

However, the DSR doesn’t just generate genetically-related joy — it also
shines light on serious genetic concerns about gamete donation. Frequently,
the DSR counsels recipients whose children have inherited undisclosed
genetic disorders, or who have discovered their donor was dishonest
regarding health, or that the sperm bank didn’t notify them about reported
illness or amended the medical profile.

The number and severity of these health matters is discomfiting. Since US
donors can father many offspring (one DSR donor has more than 120 known
offspring) donors can transmit disease to scores of children.

Ranking only second to seeking contact with genetic relatives, DSR members
cite interest in sharing or warning about health issues. The DSR is the only
facility whereby donors, recipients and offspring can unrestrictedly and
immediately share medical information. Thousands use it for this purpose.

Currently, many US sperm banks either refuse to update donor/offspring
medical information or, even if they accept updates, refuse to share the
information, or make the process of reporting so complex or expensive that
donors and recipients simply cannot comply or afford it.

Amazingly, in this era of genomic sequencing, some US sperm banks don’t
carry out basic genetic screening techniques such as karyotyping – a test to
look for chromosomal abnormalities which might cause genetic problems.
Recently, the DSR undertook to notify recipients that a New England
Cryogenic Center (‘NECC’) donor had a balanced translocation of chromosomes
manifesting in offspring as an imbalanced translocation with consequent
severe retardation, deafness, blindness and immobility. The DSR took on this
task because the NECC was intransigently refusing to notify recipients. The
DSR not only notified recipient members, it also trawled its database to
find discussion group visitors mentioning that particular donor.

Yet more frustrating than the time and cost expended doing such activity, is
the fact that were the NECC simply kartyotyping, this donor would have been
excluded for having pieces of his 10 and 22 chromosomes swapped around.
Tragically, the cost of karyotyping is less than the price the NECC charges
for a single vial of sperm: $400 v $530.

Despite providing a clearinghouse for medical updating, the DSR knows it
can’t reach all affected recipients. Unfortunately the sperm banks — who
could so easily notify recipients — rarely do. They ignore their moral and
obvious obligation to prevent sick children being procreated even when they
know a donor is transmitting hereditary illness.

In 2006, when 5 babies conceived by the same donor were diagnosed by a
leading medical expert as suffering from a rare disorder called severe
congenital neutropenia, the New York Times reported that when International
Cryogenics heard about the problem ‘it did not notify other recipients …
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 such reasoning is faulty. Recipients often store sperm for years and
reserve vials are frequently gifted if not needed. Also, embryos can be
frozen for years before using. Recipients clearly need to be warned about
hereditary disorders to prevent unnecessarily sick children being born.

The few genetic tests US sperm banks perform, they skimp on. Only Jewish and
French-Canadian donors are tested for Tay-Sachs, ignoring the reality that
although those ethnicities are more likely to carry the mutation, there is
still risk in other groups. Tragically, offspring have inherited Tay-Sachs
due to this policy.

Despite larger sperm banks grossing $1,000,000 – $2,000,000 per donor
through sale of vials, plus around the same amount again through selling
profiles, consultations and vial storage, US sperm banks generally shun
genetic testing. The less screening carried out, the fewer donors need be
disqualified and fewer tests also equals less cost.

The sacrificing of offspring’s health to profits goes on. In the case of
Johnson v California Cryobank (No. B137002, 2000 WL 638843), the doctors
deliberately rewrote a page within the donor’s medical profile deleting
information the donor provided indicating kidney disease in his family. This
led to the conception of a girl who by the unusually tender age of six had
kidney failure. Because Autosomal Dominant Polycystic Kidney Disease
normally strikes sufferers in their forties, doubtless the doctors thought
any prospect of litigation would be long tolled before the anticipated wave
of offspring sufferers would manifest. Since 1500 vials of the affected
donor were sold, based upon conservative estimates around 75 offspring will
ultimately be struck with kidney disease.

The DSR believes that just as self-regulation failed with monetary banks, it
has failed with sperm banks. Therefore, to protect donors, recipients and
offspring, the DSR is calling for the implementation of strict regulation,
mandatory genetic testing and the establishment of a central gamete donor
registry run by an independent authority.