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King's College London - Health: More than a medical matter






What the kids really want

08 August 2011

By Professor Naomi Cahn and Wendy Kramer

Naomi Cahn is the John Theodore Fey Research Professor of Law at George Washington University. Wendy Kramer is the Co-Founder and Director of the Donor Sibling Registry (www.donorsiblingregistry.com), which was founded in 2000 to assist individuals conceived as a result of sperm, egg or embryo donation that are seeking to make mutually desired contact with others with whom they share genetic ties.

Appeared in BioNews 619
The largest study to date of donor-conceived people has just been published in Human Reproduction (1). Its findings show the need to address two different effects of anonymous donating: first, when should children find out that their parents used donor sperm or eggs; and second, should children ever find out the identity of their donors? The researchers, from California State University and the Donor Sibling Registry, provide definitive answers to these questions. The majority of the 751 respondents believed that early disclosure was important. Three quarters recommended that only 'known' or 'willing to be known' donors should be used.

Today, disclosure turns on the type of family. Study participants who grew up in lesbian, gay, bisexual and transgender (LGBT) or single-parent households were more likely to learn of their origins at an earlier age than those of heterosexual couples. They, in turn, had a healthier or more positive view of their means of conception. The study also found that children in LGBT households are more comfortable expressing curiosity about the donor than those of heterosexual parents, and that they are significantly more likely to express this interest at a younger age. For example, twice as many LGBT offspring expressed an interest in their donor by the age of 11.

However, according to the study, offspring of heterosexual parents are more likely to be confused about their means of conception, and these families have a tougher time dealing with disclosure and honesty. Around one quarter of respondents from heterosexual families reported an inability to discuss their origins with their social father. In many cases the fathers were not aware of the children's knowledge, or that the children were actively searching for their donors.

On the other hand, regardless of family type, most donor-conceived participants were interested in learning more about the donor and any half-siblings (those who were conceived through use of the same donor). Most frequently, the participants explained that they simply wanted to see what the donor looked like, followed closely by a desire to learn more about themselves, their ancestry and family medical history. Some had even been able to contact the donor. Participants used words ranging from 'good friend', 'friend', or 'acquaintance' to 'mentor', 'aunt/uncle' or 'parent', to describe how they felt about their donors.

The findings show the need for more openness in the donor world. There is a growing trend around the world towards granting donor-conceived people access to information about their donors. In May of this year, a judge in British Columbia extended the rights of disclosure afforded to adopted children to donor children as well (2). But the US reproductive industry is not heeding the call. What is blocking these changes? Many people are unwilling to listen to the voices of the donor-conceived. They are worried that if donor anonymity disappears, the supply of donor eggs and sperm will disappear with it. The experiences of other countries show us that this is not necessarily true, and that the benefits far outweigh the costs.

Three sets of reforms provide the basis for changing the donor world. First, there needs to be education and counselling for donors and future parents about the impact of using donor eggs and sperm. Donors need to understand that they are helping to create babies, not consumer products. Parents should be encouraged to tell their children that they are donor-conceived. As one participant explained: 'I would say please, please, please be honest with your child about their origins from day oneā€¦ I can't tell you how big a shock it was to discover at the age of 25, that the man I think of as my dad isn't my biological father'.

Second, the US should establish a databank to allow donor-conceived people access to information about their origins. The Donor Sibling Registry has already facilitated contact between more than 8,400 members of the donor-conceived community, but participation is voluntary. The Government must call for the collection of additional information from all clinics and sperm banks; including record-keeping on all donors, any births from donor gametes (clinics are required to report births from donor eggs, but not donor sperm), and updating and sharing medical information.

Finally, and most radically, the US should ban donor anonymity. As the study shows, other nation states should follow the lead of the UK and other countries. Ultimately if we value children and their families, then reform must occur.

 

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

16 April 2012 - by John B. Appleby and Dr Lucy Blake 
The Nuffield Council on Bioethics has launched an inquiry on the ethics of disclosure in families with children conceived using donated reproductive tissue (i.e. eggs, sperm, or embryos). In spring 2013 the Council will publish a report on its findings, making policy recommendations where appropriate. This call for evidence is part of a long history of debate on the topic of disclosure in the UK and runs parallel to international debates in the USA, Canada, Australia and Europe... [Read More]
20 February 2012 - by Julianna Photopoulos 
Lawyers representing British Columbia's government were at the Canadian province's Court of Appeal last Tuesday attempting to overturn an earlier ruling which would effectively end anonymous gamete donation... [Read More]
16 January 2012 - by Rachel Pepa 
As an informal guide to having children after fertility problems, Precious Babies has much to recommend it. There is, however, an omission which, as a donor conceived (DC) person, I found particularly troublesome - the book is entirely devoid of DC voices... [Read More]
19 December 2011 - by Professor John Galloway 
We inherit our biological identity at conception but our humanity in a process beginning at birth. Nothing reminds us of this more than the rites and rituals surrounding birth and the way our rights change as we stop being a part of our mother and become a 'person'... [Read More]
22 August 2011 - by Oliver Timmis 
An Australian court has ruled that a lesbian couple can have the name of the sperm donor removed from their child's birth certificate.... [Read More]

27 June 2011 - by Professor Naomi Cahn and Wendy Kramer 
The fertility industry in the US state of Washington will be transformed in late July 2011, when a new law to recognise rights of donor-conceived people comes into effect. Under the changes, anyone who provides gametes to a fertility clinic in the state must also provide identifying information about themselves and their medical history... [Read More]
06 June 2011 - by Professor Eric Blyth and Dr Marilyn Crawshaw 
The regulation of assisted human reproduction in Canada has had a long and tortuous history. Twenty one years after a Royal Commission appointed by the federal government recommended legislation (1), and following several failed attempts to get legislation through the Canadian parliament, the Assisted Human Reproduction Act 2004 came into force (2)... [Read More]
23 May 2011 - by Sarah Guy 
Anonymous egg and sperm donation will no longer be permitted in British Columbia (BC), Canada, after a donor-conceived woman, Olivia Pratten, took the provincial government to court to argue that its adoption laws discriminated against individuals such as herself.... [Read More]
06 December 2010 - by Professor Eric Blyth 
Australia has been a noted pacemaker in the field of assisted reproduction. It was the first nation to report embryo relinquishment for family-building, and a pregnancy and live birth from a previously cryopreserved human embryo. The Australian state of Victoria was among the world's first jurisdictions to remove the rights of gamete and embryo donors to remain anonymous... [Read More]
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... [Read More]

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