Should children be told they were donor-conceived?

Is the decision to tell children they were conceived using donor eggs or sperm a private matter for the family, or is this information so important that health and social care professionals should get involved? The Nuffield Council on Bioethics has today launched a call for people’s views on this and other ethical questions related to information about donor conception.Many people support openness within families about donor conception, including organisations representing donor-conceived families and social workers, and the fertility regulator. The law was changed in 2005 so that donor-conceived children when they reach 18 can find out the identity of the donor and whether they have any half-brothers or sisters. But it is not clear how many families tell their children they were donor-conceived.¹Dr Rhona Knight, a GP and chair of the Nuffield Council inquiry, said: “The law has changed to allow donor-conceived people to have more information about their donors, but many are unaware of their donor conception. We are interested in finding out why, and in hearing people’s views on the responsibilities of families with regard to telling, as well as what kind of support they might need.”The Council is also asking whether families should have access to more information about the medical and family history of the donor. Although donors are encouraged to provide full information about their family history, in practice the amount of information they make available can vary, or they may only become aware of important information after donation. People who have gone abroad for fertility treatment face even more difficulty in finding out about the history of the donor.“The importance of information about the family history of the donor varies depending on the circumstances – what, or how much, is needed to ensure that donor-conceived children receive appropriate medical care during their lives?” asks Dr Knight. “This can be a problem for health professionals too – if it comes to light that a donor has a genetic condition after a donation has taken place, clinics are often unsure what to do and who they can tell.”There are further questions around whether donors should be entitled to receive more information about children born as a result of their donation. Donors are currently given very little information, unless the children decide to make contact when they turn 18.In 2009, 1756 children were born in the UK following donor conception treatment.²The Council will use the views and evidence it gathers to inform an inquiry on the ethical issues that arise in connection with the disclosure of information about genetic origin in the context of families created using donor eggs, sperm or embryos, or surrogacy. The inquiry is being led by a Working Party that includes people with expertise in ethics, genetics, medicine, law, psychology and anthropology, as well as with direct personal and professional experience of donor conception issues. Over the next year, the Council will gather evidence and views from a wide range of people and organisations. The findings will be published in a report in spring 2013.Questions that the Council is interested in include:

Q1 Should children always be told that they are donor-conceived? If so, why?

Q2 Who should decide whether, and if so when, to tell a child that they are donor-conceived? Is this a decision only the parents can take – or should anyone else be involved?

Q3 What information do the parents of donor-conceived children need about the donor to help them look after their child? Why?

Q4 What information about the donor do donor-conceived children need? Why?

Q5 What information (if any) might an egg, sperm or embryo donor want about a child born as a result of their donation? Why?

Q6 If a donor finds out later that they have a genetic condition, should they try to pass on this information to the child conceived with their egg/sperm?

Q7 What support might donors, donor-conceived children and parents of donor-conceived children need? Who do you think ought to provide it?

The deadline for responses is 15 May 2012.Find out more about the call for evidence.

1 Before the removal of donor anonymity in 2005, research found that 28 percent of parents of children conceived using donor sperm and 40 percent of parents of children conceived using donor eggs had told their child about their conception by the time they were seven. See: Readings J et al. (2011) Secrecy, disclosure and everything in between: decisions of parents of children conceived by donor insemination, egg donation and surrogacy. Reproductive BioMedicine Online 22, 485-495.More recent figures are not available.

2 www.hfea.gov.uk/donor-conception-births.html

NOTES TO EDITORS1. ContactFor media enquiries contact:Catherine JoynsonCommunications ManagerNuffield Council on Bioethics28 Bedford Square, London WC1B 3JSTel: +44 (0)20 7681 9619Mob: +44(0)7747 635863Email: cjoynson@nuffieldbioethics.org2. The call for evidenceInformation about the call for evidence will be available on the Council’s website from 21 March 2012 at www.nuffieldbioethics.org/donor-conception. The deadline for responses is 15 May 2012.3. Case studiesA number of organisations (such as the National Gamete Donation Trust, UK Donor Link, the Donor Conception Network, and Infertility Network UK) have agreed to be contacted by journalists looking to speak to people with a personal experience of donor conception, such as donor-conceived people, their parents, and donors. Please contact Catherine Joynson for more details.4. The Working PartyThe call for evidence will inform an inquiry on the ethical issues that arise in connection with the disclosure of information about genetic origin in the context of families created using donor eggs, sperm or embryos, or surrogacy. The inquiry is being led by a Working Party, the members of which were appointed for their personal knowledge and expertise, and will not be representing the views of any organisations with which they are affiliated.Rhona Knight (chair) is a portfolio GP based in Leicester. She is a senior clinical educator at Leicester University, and is the clinical lead in the Royal College of General Practitioners’ (RCGP) Health for Healthcare Professionals pilot programme. As a GP she has been involved in teaching practical medical ethics for many years, including the ethics of professionalism, communication and of the consultation. She has an interest in making medical ethics accessible to non-specialist audiences. She is a member of the RCGP ethics committee, and is an honorary member of the Institute of Medical Ethics, and chairs the Nuffield Council’s Education Advisory Group.Wybo Dondorp is Assistant Professor of Biomedical Ethics at Maastricht University, and his main research interests are in the ethics of reproductive medicine and the ethics of genetic screening. His background is in theology and ethics, and his professional life has included time spent in teaching and as a minister of the Dutch Reformed Church. He has worked with the Health Council of the Netherlands, both in the past on the scientific staff (contributing to advisory reports on IVF and other forms of assisted reproduction), and currently as a member of the Council’s permanent committee on population screening. He chairs the Task Force Ethics & Law of the European Society of Human Reproduction & Embryology.Jeanette Edwards is Professor of Social Anthropology at the University of Manchester and currently Head of Discipline Area. Her research has focused on kinship and new reproductive technologies in the UK, and she has also directed a European, and cross-cultural, project on ‘public understandings’ of genetics. More recently she has been developing a research interest in religion and biotechnology in the Middle East.Susan Golombok is Professor of Family Research and Director of the Centre for Family Research at the University of Cambridge, and a Professorial Fellow at Newnham College. Her research examines the impact of new family forms on parent-child relationships and children’s social, emotional and identity development, with a particular focus on lesbian mother families, gay father families, single mothers by choice and families created by assisted reproductive technologies including in vitro fertilisation (IVF), donor insemination, egg donation and surrogacy.Anneke Lucassen is Professor of Clinical Genetics at the University of Southampton Faculty of Medicine, and Consultant at the Wessex Clinical Genetics Service. Her main clinical and research interests are cancer genetics, cardiac genetics and primary care genetics and she leads a research group that addresses the social, ethical and legal aspects of genetic medicine. Some of her main projects include: research on the familial aspects of confidentiality in genetics; childhood genetic testing; and incidental findings discovered through genetic tests. She is co-chair of the Southampton University Hospitals NHS Trust Clinical Ethics Committee and cofounder of the UK Genethics Club.Sheila Pike is Senior Counsellor at the Centre for Reproductive Medicine and Fertility in the Jessop Wing, Sheffield. She has a background in psychology and counselling, has been a specialist infertility counsellor for over 20 years and is a past Chair of the British Infertility Counselling Association. She has worked both privately and within HFEA licensed centres, counselling clients considering the implications of family creation using donor assisted conception and those considering donation. She also has extensive experience of counselling clients involved in surrogacy arrangements. She is a member of the National Gamete Donation Trust’s Advisory Council and an External Advisor for the HFEA.Rosamund Scott is Professor of Medical Law and Ethics at the Centre of Medical Law and Ethics in the School of Law, King’s College London. Her background is in philosophy and law, and her research and publications have centred on reproductive ethics and law. She has had extensive involvement in interdisciplinary research with others and has just been awarded (together with Professor Stephen Wilkinson, University of Keele) a Senior Investigator Award in Ethics and Society by the Wellcome Trust to support a research programme on ‘The Donation and Transfer of Human Reproductive Materials’. Other roles in policy advice and engagement include membership of the MRC Steering Committee for the UK Stem Cell Bank and, previously, the Royal College of Obstetricians and Gynaecologists’ Ethics Committee.Laura Witjens is currently Chair of the National Gamete Donation Trust, having joined the NGDT in 2003 after having been an altruistic egg donor. The NGDT works closely with patients, donors, clinics and other professionals on the issues around gamete donation. She was a member of the British Fertility Society Working Group on Sperm Donation Services and a member of the HFEA Donation Advisory Group.5. The Nuffield Council on BioethicsThe Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust. The Council has achieved an international reputation for addressing public concerns, and providing independent advice to assist policy makers and stimulate debate in bioethics. For further information see: www.nuffieldbioethics.org