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.

By admin on May 01, 2009

Response to Cheryl Miller’s “Who’s Your Daddy” Article in

My name is Karen Clark, I am from the United States and was conceived through the use of an anonymous sperm donation back in the 1960’s.  I would like to comment on Cheryl Miller’s reply to Damian Adams’s, a donor conceived man from Australia , rebuttal to her article “Who’s your daddy?”

Cheryl Miller emphasized a fear of conception method disclosure as an argument against identifying ‘donor’ (biological father) information disclosure. Quote: ” Indeed, as I noted in my article, the right to information does not necessarily lead to greater openness. A mandated registry might win offspring the right to know their donor’s identity, but if it means future parents are less willing to disclose their children’s status, it won’t be much of a victory.”

I strongly disagree with this logic/reason. First, I would like to know what facts and research she based this assumption on?  It could equally be argued that parents would be less likely to disclose because they DID use an anonymous ‘donor’ out of fear that the child will be upset, confused or feel rejected because their biological father was not open to contact from them.

Further, according to CNN ( more than 80% of the California Cryobanks clients are single or lesbian women. Obviously, disclosure is not an issue in these situations when the “Who is my daddy?” question is inevitably asked of them by their children. The argument that open identity ‘donors’ might create non-disclosure (for possibly a very small minority of families conceiving through the use of ‘donor’ gametes) is just not a strong enough argument to continue institutionalized anonymity.

While Cheryl Miller notes that would-be-parent’s desire for a child is not a “whim”, I equally argue that a person’s desire for identity and meaningful connection to half (or all) of their genetic roots and ancestry is not a “whim” or mere “curiosity”. This is just as much a natural biologically rooted and emotional/psychological predisposition as a desire for a child. Not all people feel the desire for a genetically related child to fulfill their needs, just as not all people feel the desire to know the identity of their biological father and/or be allowed to have meaningful connections with their genetic roots and ancestry to fill their needs. Each individual will feel differently but one should not trump another.

Some like to argue that these disconnects happen all the time in other unintended ways, but this equally does not justify giving professionals, institutions and the gamete industry the legal power to withhold information from the very people they help to create.

The Hippocratic Oath, “Do no harm”, needs to apply to all interested parties in these complicated family formations. Let’s not forget that this should and must, first and foremost, apply towards the very people (and their children) that they are all intentionally collaborating together to bring into this world – People who might have a deep biologically rooted, emotional and psychological need to know this information for their sense of personal identity, belonging, connection and emotional well being; not only for themselves but for their own children as well.

Who is to say that biology does or doesn’t matter in our personal definition of family and identity? Let’s try to move forward in a way that that respects everyone’s choice while putting emphasis on the yet to be conceived offspring’s anticipated consent.

And another:

Cheryl Miller’s “Who’s Your Daddy?” (February) suggests that infertile couples are being denied the chance to procure a child through a financial transaction because of the demands of offspring already created in this manner. But the assertion that eliminating anonymous donations and creating registers in Europe and Australia have resulted in donated gamete shortages is a scaremongering propaganda campaign to garner sympathy and attract more donors.

Donor numbers around the world had been dropping for many years prior to these changes. South Australia, which guarantees anonymity through legislation, has seen a reduction in donations since enactment. The state of Victoria had an increase in donors the year after banning anonymous donations and implementing a centralized register. U.K. clinics that undertook active recruitment campaigns shortened their waiting period drastically while those not recruiting complained of shortages. Donor numbers in New Zealand increased after anonymousdonations were ended. The U.K. DonorLink register has been operational only since 2004, not 1995 as reported, making the link between registers and shortages in this period rather tenuous. Donor shortages can equally be explained by the attitudes of men as opposed to any imposed restrictions.

Research to be published in Sterility and Fertility shows that 87 percent of adult donor offspring wish to know their biological father’s identity, 62 percent want to at least meet him once, and 26 percent want to establish a relationship with him. Paternal kinship is a vital component of the lives of donor-conceived offspring, and it should not be subverted to cater for the whims and desires of the infertile.

Damian Adams
Adelaide, Australia

And my two cents:

The donors that you say were “spooked” by the New Scientist article about a teen discovering his donor’s identity through DNA testing should have already been educated and counseled by the sperm banks to the fact that anonymity can no longer be guaranteed. Sperm banks should never be promising anonymity, as DNA testing, as well as Google have made guaranteed anonymous sperm donation a thing of the past. I know this because I hear quite frequently from people who have easily figured out who their donors are with the non identifying information given to them in the “donor profiles” they receive when they purchase the sperm.

I speak to donors all the time who would be willing to meet their genetic offspring, but hesitate because they are not sure of the law and how it would affect their rights and responsibilities as a biological parent. The donors, parents and donor conceived people on the Donor Sibling Registry are working together to hopefully change the existing laws to better protect the children being born, by promoting early disclosure, by using only willing-to-be-known donors, and promoting pre-pregnancy third party counseling for all parents and donors. It is important for parents to know the importance of honoring a child’s curiosity and the importance of early disclosure. It is also important for the donors to know that there are currently no accurate records kept on how many kids are born from any given donor and that many of the kids born from their donations may indeed want to know who they are.  We would also like to see the donors legally protected so that they can feel more comfortable coming forward to make contact with their genetic offspring.

There is a lot of work to do, and having this public discussion is a great first step!

Wendy Kramer