Ending Donor Anonymity – No Shortage of Donors

Sperm Donors – a National Shortage?
Beth Sullivan

In 2005 the law affording anonymity to UK Sperm donors changed. Children conceived by sperm donor cycle were granted the right to approach The Human Fertilisation and Embryo Authority (HFEA) and request the identity of genetic parents. The ruling did not apply retrospectively and it won’t be until 2023, when the first enabled child reaches 18, that this information will be released. A furor of negative speculation surrounded the revision. Experts warned that the lack of anonymity would deter potential donors, in spite of enabled children having no prospect of a financial or legal claim against them. When the HFEA published the figures for sperm donor registration, instead of confirming the predicted fall, numbers had risen, from 272 in 2005 to 303 the following year, not only disproving the widely believed portent, but also reversing a 3 year slump.

An existing model

Sweden had already undergone an amendment to its own anonymity laws. The rights of native sperm donors to remain unaccredited were revoked in 1985. Instead of discouraging donors, the identity disclosure ruling only changed the nature of the applicant. Pre-ruling, the majority of donors were young single men. Post-ruling saw an influx of older males, many of whom were in stable relationships with children of their own. Donor intentions were considered to be more altruistic in nature. The UK has followed suit and seen a similar shift in donor characteristics.

Shortage

Despite no decline in registered sperm donors since the 2005 change in law, accordant media continue to claim there is a national shortage. Bionews reported that at the Progress Educational Trust debate on the topic in 2009 ‘the removal of entitlement to donor anonymity’ was a major factor discussed by delegates considering the shortage. The HFEA has considered raising the number of families one donor can assist from 10 to 20 in an effort to combat the perceived deficiency. A belief given further credence by the long wait faced by would be parents, some of which have sought donors in Denmark, Spain and the US. This practice of ‘fertility tourism’ sparked further concern. Many seeking treatment outside the EU encounter clinics not subject to the rigorous regulatory standards demanded in the UK. In some countries there is no obligation to screen donors for genetic problems or infections like HIV.

The reality

The HFEA finally revealed that failing administrative procedures in clinics were responsible for protracted waiting lists. The failure to track the number of births enabled by a single donor has led to sperm being held back for fear of surpassing the 10-birth restriction. It has been reported that the average sperm donation made between 2006 and 2008 assisted only 1.5 families, well below the 10 family cap. Laura Witjens, chair of the National Gamete Donation Trust, said, ‘this waste amounts to 85%.’ It can be argued that some instances of low facilitation are due to donors imposing limits upon their own donations. Though this remains their prerogative, 80% of donors agree with the 10 family curb. Despite this, only six of the 975 donors registered between 2006 and 2008 enabled 10 families, a figure representing less than 1%. In defense of these allegations, clinics explained how frozen sperm stock sold to secondary clinics proved problematic. As the first vendor clinic retains responsibility for keeping track of births, the task of accounting for enabled families is left to them. Many reported difficulties in chasing secondary clinics for follow up data. Classification is another issue. Frozen embryos from donor sperm: are they to be counted as a pregnancy? These issues cause problems with monitoring the limit, which in turn may erect barriers to donor supply.

A review of procedure

With the number of donors approaching 500, it is thought to be enough to satisfy the needs of the British public. In fact Witjens made a controversial statement to this end, ‘at this point in time, we have enough donors.’ It would seem that clinics must review their procedures and the HFEA consider why donations fail to reach the potential dictated by their own policy. For them to debate an increase in the family limit to 20 seems pointless with the current infrastructure in place. Until these issues are addressed, the HFEA should concentrate on utilising the stocks already present and not pursuing shortage claims.
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Beth Sullivan is a freelance writer from England who writes for a number of technology journals covering business supply and company strategies. Applying this analysis to the donor issue she was surprised how little the assertions of the mainstream press are supported.

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One Response to Ending Donor Anonymity – No Shortage of Donors

  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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