The number of couples seeking fertility treatment is rising every year.  But donor assisted conception poses huge ethical and human rights issues.  Up until 10 years ago, sperm donors and women who donated eggs had a right to remain anonymous.  Then the law was changed in 2005 giving donor conceived people the right to information about their donors.  Most people agree that this was a milestone to be celebrated, but does it go far enough?

This podcast explores the issues.  it is drawn from an event organised by the Progress Educational Trust  and is introduced by the Chair of the event, Charles Lister, Chair of the National Gamete Donation Trust, and former Head of Policy at the Human Fertilisation and Embryology Authority. He quoted a speech by the Public Health Minister, Melanie Johnson made in 20014,
'Clinics decide to provide treatment using donors; patients make a decision to receive treatment using donors; donors decide to donate. Donor-conceived children, however, do not decide to be born – is it therefore right that access to information about the donation that led to their birth should be denied to them?'
This quote encapsulates the essence of the debates that led to the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004, which allow donor-conceived people born from donations made after 1 April 2005 access to identifying information about their donor on reaching the age of 18. It also set the scene for a series of lively presentations from a panel of five experts, who took to the stage to offer their perspective on the impact of the legislation.

L to R Charles Lister, Juliet Tizzard, Susan Golmbok, Jo Rose, Venessa Smith, Eric Blythe

First to speak was Juliet Tizzard, Director of Strategy at the Human Fertilisation and Embryology Authority (HFEA), who gave the regulator's perspective on the change in law. Tizzard identified the lack of reliable outcome metrics in relation to donor conception as a key challenge, and hindrance, to accurate impact evaluation of the 2004 regulations. She also opined that the assessment of post-regulation sperm and egg donation trend as proxy measure of impact showed a gradual but steady increase in number of new donors registering in the UK – a reality that is a far cry from the doomsday prophecies of the early critics of the law, who predicted the possibility of severe donor shortages arising as a result of the end to donor anonymity.


Next on stage was Dr Jo Rose, a donor-conceived adult who won a landmark court case that contributed to the decision to end donor anonymity in the UK. In her presentation, Rose argued that donor-conceived children should, as a matter of course, have more support and the right to access full and complete information about their genetic parent, particularly because 'wrong and incomplete medical history kills people'. She also argued that a lack of retrospective access to identifying information means a number of donor-conceived people born before April 2005 live the rest of their lives 'tortured' by not knowing who their genetic family is.

'Why then should we have legislation that protects the rights of donors but ignores the rights of donor offspring?' she asked the audience, and quoted Kevin Staudt's song, Novum:



Rose's presentation gave a personal note to the debate and made it easy to appreciate the rationale behind her call for retrospective disclosure of donor identity. According to her, more needs to be done to ensure 'equality and respect for genetic kinship and identity for all groups of the society'.

Eric Blyth, Emeritus Professor of Social Work at the University of Huddersfield, also made a case for retrospective disclosure of donor identity. Using data from the HFEA, Professor Blyth argued that the lack of retrospective access to identifying donor information means that upwards of 20,000 donor-conceived people born between 1991–2004 in the UK are denied the right to ...

Ver todos los episodios