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The Fertility Show


 

Sperm donation: The US regulatory vacuum and its ethical ramifications

21 June 2010

By Professor Vardit Ravitsky

Vardit Ravitsky is an assistant professor in the Bioethics Programs at the Faculty of Medicine, Université de Montréal

Appeared in BioNews 563
The debate surrounding the rights and welfare of donor offspring has been gaining momentum over the past few years, and a growing number of countries have already banned anonymous sperm donation to ensure the right of offspring to access information about their donors. In the US, however, anonymous donation is not only legal but is still the prevailing norm. With no central registry and no federal or state regulation requiring long-term record keeping, information about donors is kept by individual sperm banks and fertility clinics according to various standards and for different lengths of time.

The outcome of the current situation is that many US donor offspring will never have potential access to information about their donors (either non-identifying or identifying information subject to donor's consent to disclosure). This reality raises serious issues regarding the ethics of denying individuals the right to information about their genetic origins. It also makes it particularly important to collect data on the actual needs and desires of donor offspring, which could provide empirical support for future policy initiatives.

The release of a report on a new American study of young adults conceived through sperm donation on 31 May provides an opportunity to comment on the ethical ramifications of this US regulatory vacuum. The report itself is a popular presentation of the study's findings and, as such, it proposes one of many possible interpretations of the study's data. The empirical data itself, however, is rich and deserves the attention of prospective parents, policy makers, researchers and bioethicists.

The study was designed to probe the identity, kinship, well-being, and social justice experiences of donor-conceived adults. It is unique insofar as it contains the largest reported sample to date and its methodology successfully prevents selection bias to the extent possible. Furthermore, it is the first study of this scale which provides comparisons with adoptees and with individuals who were raised by biological parents.

Unsurprisingly, the data tells a complex story. For example, a majority of donor offspring favour the practice of donor conception (61 percent), believe that society should encourage people to donate sperm and eggs (73 percent) and think that health insurance plans should make it easier for people to have babies with donated sperm or eggs (76 percent). At the same time, on an individual level, a large minority say that the circumstances of their conception bother them (45 percent) and a much bigger percentage of donor offspring (43 percent) than that of adoptees (15 percent) or people raised by biological parents (6 percent) feel confused about who is a member of their family.

Although this multifaceted data can lead to various interpretations and proves the need for further research, one element clearly emerges: being told the truth about their conception and having access to information about donors are indeed perceived by donor offspring as an important element in their well-being. A very large majority (80 percent) feel that 'donor conception is fine as long as parents tell children the truth about their conception from an early age' or that telling early on 'makes it easier for the children'. In addition, 68 percent feel that they have the right to non-identifying information about their donor, 67 percent that they have the right to know his identity, and 63 percent that they should have the opportunity to form some kind of relationship with him. What surfaces is the importance of securing at least the possibility of access to information and the acute inadequacy of the current situation in the US.

The report presenting the study's findings makes some recommendations that may seem extreme and impracticable in the current US context, such as banning anonymous donations or the call to would-be parents to 'consider not conceiving a child with donated sperm or eggs'. It also makes important and realistic recommendations, such as the call for a large-scale longitudinal research study on the well-being of donor offspring, or for mandatory counselling of prospective donors and parents regarding what is known about the life experiences of donor offspring.

Another crucial recommendation supported by the study's data but missing from the report is the immediate creation of central confidential registries that would safely record all data related to genetic origins and genetic relatedness (i.e. the identities of donors, donor-offspring and donor-siblings) for an indefinite period of time. Such registries should be created now regardless of the current legal status of anonymous donation. They would ensure that if and when a change in policy becomes possible, future access to information may at least be technically possible.

 

SOURCES & REFERENCES

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

27 February 2017 - by Wendy Kramer 
In the US, the donor-conception industry is largely unregulated, and there is wide variation in egg- and sperm-bank policies and procedures. Problems often arise as a result of lack of consistency around medical testing, health history follow-up, sharing and updating medical information, openness and transparency, and record-keeping and communication...
27 February 2012 - by Dr Rachael Panizzo 
As a generation of donor-conceived children reach adulthood, Anonymous Father's Day looks at donor conception from the perspective of the children. It follows three donor conceived people who are actively raising awareness of donor conception, and the rights of donor-conceived children...
17 October 2011 - by Dr Zara Mahmoud 
Increasing numbers of women under the age of 25 are turning to sperm donors online, an investigation by the Sunday Times has shown. Many of these women have stable jobs and good support networks, and see no reason to wait before starting a family...
29 November 2010 - by Damian Adams and Dr Marilyn Crawshaw 
Australia has, in recent years, had to face up to the social and emotional adversity caused by past policies. Attention is now turning. A Federal Inquiry into Donor Conception is examining the plight of what Damian Adams has called 'the 'donated' generation' (1). These are the thousands of people conceived using donated gametes who have been denied knowledge of their biological kinship, heritage, familial health history and conception...
29 November 2010 - by Seil Collins 
The National Gamete Donation Trust (NGDT), together with fertility clinic Manchester Fertility Services, has launched an initiative to recruit sperm donors in the North-West of England....

14 June 2010 - by Professor Eric Blyth 
Unlike either oocyte or embryo donation, sperm donation presents a massive PR problem - masturbation. At least since Onan came to a sticky end, masturbation (aka 'self-abuse') has both suffered censure and has provided a fertile source for low-grade humour....
10 June 2010 - by Antony Blackburn-Starza 
A study into the attitudes of donor-conceived siblings has been published in the US. Said to be the first empirical study of its kind in the US...
26 April 2010 - by Ben Jones and Dr Vivienne Raper 
Should egg and sperm donors be rewarded with souvenir mugs and T-shirts? An independent think tank has launched a consultation to consider this and other radical ideas for increasing donations...
12 April 2010 - by Sarah Pritchard 
The UK's first stand-alone clinic focused on recruiting new sperm donors, has announced its opening. The London Sperm Bank (LSB) - licensed by fertility watchdog, the Human Fertilisation and Embryology Authority (HFEA) - will incorporate two existing sperm banks, the Louis Hughes Sperm Bank, and the London Women's Clinic's (LWC's) own bank...

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