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The birth of donor offspring rights in the USA?

27 June 2011
By Professor Naomi Cahn and Wendy Kramer
Wendy Kramer is Director and co-founder of the Donor Sibling Registry and Naomi Cahn is the John Theodore Fey Research Professor of Law at The George Washington University Law School
Appeared in BioNews 613
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 (1).

While most fertility clinics already collect this information, and make medical information available to the people who use it, the law will allow donor-conceived children, once they reach 18 years old, to contact the clinic that provided the gametes to request identifying information about their donor and their donor's medical history. The law states, however, that the donor can veto disclosure to prevent the clinic from revealing his or her identifying information - but the donor offspring will still be entitled to their anonymised medical history.

Washington is the first US state to take such a step. Elsewhere in the US, not only can fertility clinics destroy records before the child turns 18, but also donor-conceived people are not entitled to any information held about their donor. Medical information is also rarely updated and shared among donors and recipients' families.

Other countries have adopted similar measures. Sweden enacted legislation in 1984 that allows donor offspring the right to receive identifying information about their donor. Austria, New Zealand, the Netherlands, Norway, Switzerland, the UK, and some states in Australia have also removed donor anonymity and have established systems to help people find out their donor’s identity. In May, shortly after Governor Christine Gregoire signed the Washington state legislation, the British Columbia Supreme Court in Canada declared donor-conceived people must be treated in the same way as people who had been adopted with respect to accessing information about their biological origins.

The new law in Washington is an important US milestone. It is, however, flawed because it allows for a disclosure veto, allowing donors' alleged interests in privacy to trump the interests of donor-conceived people in learning the donor’s identity.

For many donor-conceived people, learning about their biological parent(s) is much more than just learning about their donor's medical history. The issues and concerns of donor offspring are often complex and multi-dimensional. As in adoption, many donor-conceived people feel that until they know about their ancestral and genetic heritage, they will not have a full sense of self-identity. After many decades of silence, and fueled by the movement towards full disclosure within families, the voices of donor conceived people are being heard world-wide, demanding what they see as their basic human right to know about and connect with their genetic families.

Dr Vasanti Jadva, at the Centre for Family Research at the University of Cambridge, collaborated with Wendy Kramer, and several others, in a study looking at the experiences of donor-conceived people in searching for, and contacting, their donor siblings and donor. They recruited 165 participants through the Donor Sibling Registry and found 77 percent were actively searching for their donors. In this group, the top reasons for searching were listed as 'Curiosity about characteristics of your donor'; 'Wanting to meet your donor'; 'Medical reasons'; and 'To have a better understanding of why I am, who I am' (2).

More recently, in a large-scale study of donor-conceived people (751 in total) - with about half of the respondents coming from the general public - 82 percent of respondents indicated a desire to be in contact someday with their donor (3). Top reasons for searching were 'To see what he looks like'; 'To learn more about my ancestry' and 'To learn more about myself'.

Several explain: 'It makes me angry that I am denied the basic right of knowing who my father was and what ethnicity I am'; and: 'Angry and frustrated that I can’t get information about my heritage, genetics, looks, and medical history'.

Some argue that lifting anonymity might cause a donor shortage, but experiences in other countries show otherwise. For example, although a reported shortage of sperm in the UK has been blamed on the removal of anonymity, journalist Liza Mundy documented last year that 'there has not been a decline in registered sperm donors following the 2005 change, and it's arguable that there is not a shortage of donor sperm now'(4). She said: 'The number of sperm donors has risen in the UK since the identity-disclosure rule took effect'.

There are also fears that banning anonymity is part of a slippery slope towards regulating not just what gametes are available but who has access to those gametes. This is unjustified. In fact, the UK has extended equality of treatment to same-sex couples after abolishing donor anonymity (5).

The new Washington state law is a first step towards what we hope will be a new attitude of openness throughout the USA.

1) Engrossed Second Substitute House Bill 1267 - Uniform Parentage Act
2) Jadva, V; Freeman, T; Kramer, W; Golombok, S. 'Experiences of offspring searching for and contacting their donor siblings and donor'
Reproductive Bio Medicine online, (2010) March 2010 |  3 February 2010
3) Beeson et al.
Human Reproduction (in Press) | 
4) Shortage? What shortage? How the sperm donor debate missed its mark
The Guardian |  19 September 2010
5) Same-sex couples given equal IVF rights
Nursing Times |  6 April 2009
27 February 2012 - by Dr Marilyn Crawshaw and Walter Merricks 
It is now eight years since the HFEA first issued guidance to UK licensed treatment centres to respond as fully as possible to patients' requests for non-identifying donor information...
22 August 2011 - by Oliver Timmis 
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8 August 2011 - by Professor Naomi Cahn and Wendy Kramer 
The largest study to date of donor-conceived people has just been published in Human Reproduction. 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?...
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23 May 2011 - by Sarah Pritchard 
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16 May 2011 - by Vince Londini 
On November 2, 2010, Elizabeth Marquardt testified before the Australian Senate. Her remarks included this statement: 'But I also want to make clear that - even with openness - the problems [allegations that donor-conceived children are more prone to social and legal trouble] do not completely go away. There seems to be something else about knowing that the person who raised you also deliberately denied you your other parent before you were even born'...
14 March 2011 - by Ben Jones 
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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...
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...
12 April 2010 - by London Bridge Fertility, Gynaecology and Genetics Centre 
The regulations governing the reimbursement of donors and the withdrawal of donor anonymity in the UK have combined to ensure that there are insufficient egg donors to meet requirements...
19 January 2010 - by Dr Lucy Frith 
The last five years have seen a fundamental change in public policy in the UK over gamete donor anonymity. In 2004 the law allowed donor offspring to have access to identifying information about their donor when they reach 18 and the revised Human Fertilisation and Embryology Act 2008 now includes new provisions for disclosure of information for donor-conceived individuals and gamete/embryo donors. However, there is an important omission in these recent polic...
10 November 2008 - by Sarah Pritchard 
A 26 year old woman in Canada conceived using donor sperm has begun legal action to attempt to make available the identities of anonymous sperm donors, including that of her own father. Olivia Pratten is acting on behalf of all those in British Columbia (BC) conceived using...
3 July 2006 - by Dr Kirsty Horsey 
Children born following the use of donor sperm or eggs in the Australian state of Victoria will now, from 1 July, be able to trace their biological parents when they reach the age of 18. Relatedly, donors of gametes will also be able to apply for...
24 March 2004 - by BioNews 
The ethics committee of the American Society for Reproductive Medicine (ASRM) says that parents who use fertility treatment with donor sperm or eggs should be 'encouraged' to tell their children how they were created. The ethics committee does not say that telling children should be compulsory, stating instead that parents...
28 April 2003 - by Dr Ainsley Newson 
Should children conceived through the use of donated gametes have access to information identifying their donors when they reach maturity? The UK Government is expected soon to decide that, from now on, the answer to this question is to be 'yes'. But is this a good idea? Even though there...
7 January 2002 - by BioNews 
The Public Health Minister, Yvette Cooper, has published a consultation paper on the issue of what information should be able to be provided to people born as a result of gamete or embryo donation. Figures from the Human Fertilisation and Embryology Authority show that since 1991 nearly 18,000 babies have...
26 July 1999 - by BioNews 
Health ministers are looking at ways of giving children born as a result of donated gametes the legal right to track down their biological parents. The government has confirmed that it will publish a consultation paper in the autumn on what information should be given to children born of sperm...
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