Donor conception: ethical aspects of information sharing

ISBN: 978-1-904384-28-1

보고서 바로보기 : http://nuffieldbioethics.org/wp-content/uploads/2014/06/Donor_conception_report_2013.pdf

Table of Contents
Nuffield Council on Bioethics ................................................................................................................... iii
Acknowledgments .................................................................................................................................... v
Foreword ................................................................................................................................................. vii
Members of the Working Party ................................................................................................................ ix
Terms of reference .................................................................................................................................. xi
Executive summary ................................................................................................ xv
Introduction ............................................................................................................... 1
Structure and key questions to be considered in this report ................................................................... 2
Chapter 1 Families created through donor conception ...................................... 4
Creating a family through donated gametes and embryos...................................................................... 4
Family and kinship ................................................................................................................................... 6
Comparisons with other family forms .................................................................................................... 11
Current context ...................................................................................................................................... 12
Choice of language in donor conception ............................................................................................... 14
Chapter 2 Law and practice in the UK ................................................................ 18
Collecting and accessing information about donors .............................................................................. 18
Early disclosure to donor-conceived people .......................................................................................... 26
Legal challenges to the law on disclosure ............................................................................................. 27
Support for people affected by donor conception .................................................................................. 33
Chapter 3 Medical information and family history ............................................ 42
Introduction ............................................................................................................................................ 42
Background on genetic information and family history .......................................................................... 44
Law and guidance on medical screening and selection of donors ........................................................ 46
Access to medical information by donor-conceived people and parents .............................................. 49
Conclusions on access to medical information ..................................................................................... 51
Chapter 4 Knowledge of donor conception and access to donor information:
the evidence ............................................................................................................ 54
Disclosure decisions: overview .............................................................................................................. 57
Impact of disclosure on donor-conceived people .................................................................................. 62
Impact of non-disclosure and disclosure on family functioning ............................................................. 70
Impact on parents and prospective parents of donor-conceived people ............................................... 75
Impact on donors and potential donors ................................................................................................. 78
Conclusions about evidence .................................................................................................................. 83
Chapter 5 Ethical considerations ....................................................................... 86
Introduction: people and relationships ................................................................................................... 87
xiv
Rights, interests, values and responsibilities ........................................................................................ 88
Values in relationships .......................................................................................................................... 94
Weighing interests ................................................................................................................................. 98
Reciprocal responsibilities within relationships ................................................................................... 100
Responsibilities of third parties............................................................................................................ 105
Chapter 6 Implications for regulation in the UK .............................................. 112
Prospective parents ............................................................................................................................. 113
Parents and donor-conceived people during childhood and into adulthood ....................................... 123
Donor-conceived adults who do not have access to information ........................................................ 131
Donors ................................................................................................................................................. 134
Appendices ............................................................................................................ 139
Appendix 1: Method of working ........................................................................................................... 140
Factfinding sessions ............................................................................................................................ 140
External review .................................................................................................................................... 143
Appendix 2: Wider consultation for the report ..................................................................................... 144
List of respondents to the call for evidence.................................................................................. 145
Appendix 3: The Working Party ........................................................................................................... 147
Glossary .............................................................................................................................................. 149
List of abbreviations ............................................................................................................................ 150
Index .................................................................................................................................................... 151