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Donor conception: ethical aspects of information sharing Previous Nuffield Council Reports Emerging biotechnologies: technology, The use of genetically modified choice and the public good crops in developing countries: Published December 2012 a follow-up Discussion Paper Novel techniques for the prevention of Published December 2003 mitochondrial DNA disorders: Pharmacogenetics: ethical issues an ethical review Published September 2003 Published June 2012 Genetics and human behaviour: Human bodies: donation for the ethical context medicine and research Published October 2002 Published October 2011 The ethics of patenting DNA: Biofuels: ethical issues a discussion paper Published April 2011 Published July 2002 Medical profiling and online The ethics of research related to medicine: the ethics of healthcare in developing countries ‘personalised healthcare’ Published April 2002 in a consumer age Stem cell therapy: the ethical issues Published October 2010 – a discussion paper Dementia: ethical issues Published April 2000 Published October 2009 The ethics of clinical research Public health: ethical issues in developing countries: Published November 2007 a discussion paper The forensic use of bioinformation: Published October 1999 ethical issues Genetically modified crops: Published September 2007 the ethical and social issues Critical care decisions in fetal and Published May 1999 neonatal medicine: ethical issues Mental disorders and genetics: Published November 2006 the ethical context Genetic Screening: a Supplement Published September 1998 to the 1993 Report by the Nuffield Animal-to-human transplants: Council on Bioethics the ethics of xenotransplantation Published July 2006 Published March 1996 Donor conception: The ethics of research Human tissue: ethical and legal issues involving animals Published April 1995 ethical aspects of Published May 2005 Genetic screening: ethical issues information sharing The ethics of research related to Published December 1993 healthcare in developing countries: a follow-up Discussion Paper Published March 2005 Nuffield Council on Bioethics Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Printed in the UK © Nuffield Council on Bioethics 2013 ISBN 978-1-904384-28-1 Published by Nuf eld Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: 020 7681 9619 Email: bioethics@nuf eldbioethics.org Website: http://www.nuf dbioethics.org ISBN: 978-1-904384-28-1 April 2013 To order a printed copy, please contact the Nuf eld Council on Bioethics or visit the website. £10 per report (where sold) Developing countries: Free: © eld Council on Bioethics 2013 All rights reserved. Apart from fair dealing for the purpose of private study, research, criticism or review, no part of the publication may be produced, stored in a retrieval system or transmitted in any form, or by any means, without prior permission of the copyright owners. Web references throughout this report were accessed in March 2013. Printed in the UK by: ESP Colour Ltd. Elgin Drive Swindon Wiltshire SN2 8XU http://www.espcolour.co.uk Printed using vegetable based inks on FSC® Donor conception: ethical aspects of information sharing Nuffield Council on Bioethics Professor Jonathan Montgomery (Chair) Professor Ottoline Leyser (Deputy Chair) Professor Tom Baldwin* Dr Amanda Burls Professor Peter Furness (from March 2013) Professor Robin Gill Professor Erica Haimes (from March 2013) Professor Sian Harding (up to January 2013) Professor Ray Hill (up to January 2013) Professor Julian Hughes (from March 2013) Sir Roland Jackson (from March 2013) Dr Rhona Knight** Professor Graeme Laurie Dr Tim Lewens Professor Anneke Lucassen Professor Mick Moran (up to January 2013)*** Professor Alison Murdoch (up to January 2013) Dr Bronwyn Parry (up to January 2013) Professor Martin Richards**** Professor Nikolas Rose (up to January 2013) Dr Geoff Watts FMedSci Professor Jonathan Wolff * Co-opted member of the Council while chairing the Working Party on Novel neurotechnologies: intervening in the brain ** Co-opted member of the Council while chairing the Working Party on Donor conception: ethical aspects of information sharing *** Co-opted member of the Council while charing the Working Party on Emerging biotechnologies: technology, choice and the public good **** Co-opted member of the Council while chairing the Working Party on Genomics, health records, database linkage and privacy iii Secretariat Hugh Whittall (Director) Kate Harvey Katharine Wright Tom Finnegan Peter Mills Rosie Beauchamp Emily Postan Sarah Walker-Robson Catherine Joynson Ranveig Svenning Berg Carol Perkins Johanna White The terms of reference of the Council are: 1. to identify and define ethical questions raised by recent advances in biological and medical research in order to respond to, and to anticipate, public concerns; 2. to make arrangements for examining and reporting on such questions with a view to promoting public understanding and discussion; this may lead, where needed, to the formulation of new guidelines by the appropriate regulatory or other body; 3. in the light of the outcome of its work, to publish reports; and to make representations, as the Council may judge appropriate. The Nuffield Council on Bioethics is funded jointly by the Medical Research Council, the Nuffield Foundation, and the Wellcome Trust iv Acknowledgments The Working Party would like to express their gratitude to all those who contributed to the production of this report, through responding to the open call for evidence or online survey, attending factfinding sessions to share their knowledge and debate issues directly with the Working Party, or acting as external reviewers of the draft report (see Appendices 1 and 2). In addition to contributing in these ways, a number of people were particularly generous with their time and expertise, and we would like to offer special thanks to: Joanne Anton, John Appleby, Lucy Blake, Marilyn Crawshaw, Tabitha Freeman, Nicky Hudson, Wendy Kramer, Susannah Merricks, Walter Merricks, Olivia Montuschi, Juliet Tizzard and Sophie Zadeh. v Foreword It is said that there is nothing new under the sun. However, when one looks at the ethical aspects of information sharing in donor conception it intuitively feels that there is something new. While sperm donation has a long history in the Western world, innovative reproductive techniques using donor eggs, embryos and even wombs are all recent technological developments. With these new technologies come new ethical challenges. These new challenges are compounded by the increased availability of, and access to, information ± both medical and social. In the area of donor conception in the UK what information is available, and to whom, is well regulated. However not all donor conception takes place within a regulated system, and new technologies have enabled access to information in new ways. For example, medical genetics has allowed individuals to identify those to whom they may be related and the internet has facilitated access to, and enabled linking of, information in ways that have not previously been possible. As a result, donor-conceived people are now making links with donors and donor-conceived siblings in new ways. But what are the ethical aspects of information sharing in donor conception? Is there really anything new under the sun? While the Working Party found that new technologies did pose new ethical questions, many of the key issues are ages old, for information sharing in the context of donor conception has, at its heart, people. It is about families, kinship and relationships. In the early stages of developing this project, it became apparent that there were many interests at stake, and also very different heartfelt views on this issue, even amongst people coming from a similar perspective. A Working Party representing the full diversity of these views would have been too large to be practical. A small expert Working Party was therefore brought together, establishing a consultation process to ensure that the Working Party would hear, and could take full account of, the multiplicity of views and the diversity of contexts in which reproductive donation occurs. It was essential for the Working Party to consider the different perspectives of those affected by donor conception, being aware that in each corner of the µdonor conception triangle¶ ± donor, recipient parent/s and donor-conceived offspring ± opinions were not uniform, and indeed could be poles apart. The Working Party also needed to consider the wider network of family, kin and cultural groupings impacted by, and impacting on, the µdonor conception triangle¶, bearing in mind how all these interdependent relationships change over time. It also needed to consider throughout the one group it could not hear from ± those who are donor-conceived, but who are unaware of this. The word µinformation¶ is used in many different ways in donor conception. It can, for example, be information relating to the fact that an individual is donor-conceived. It can also be information about the donor themselves ± information about their medical history, their genetic makeup, and who they are as people. It was important to the Working Party to identify the benefit or harm that knowing certain information might confer on the different parties, as well as when and how this information could be shared most effectively. For example, the Working Party found that there was sufficient evidence to point to the conclusion that it is usually better for
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