This study describes a project carried out working with Quaker meetings around Britain. Using questionnaires, discussions and case histories, participants explored their approaches to ethical and theological issues in genetic manipulation, including genetic testing, disclosure of genetic information, patenting and attitudes to variation and disability. Going beyond a straightforward account of opinions, the work uncovered the moral and spiritual values on which those opinions were based. Finally, the text considers the processes people use to make moral evaluations, especially in unfamiliar territory, and how this could be improved. It should be of interest to both Quakers and non-Quakers concerned about the impact of the new genetics and moral competence.
Foreword i; Preface vii; Acknowledgements ix; Chapter 1: Background 1; The wider context 4; Application 6; Support group 9; Overview of the project and the book 11; Chapter 2: Methodology 13; Questionnaire 13; Lecture 16; Workshop 19; Freda's story 21; If you could ask one question 27; Note taking 28; Analysis 28; Questionnaires 28; Workshop notes 29; Other data 30; Further considerations 30; Insider/outsider status 30; Dual nature of the project 31; Chapter 3: Being Human: Genetic Testing and Manipulation 35; Freda's choice 36; Genetic determinism 41; The value of self-knowledge 43; The meaning of suffering 45; Genetic manipulation and human identity 51; Chapter 4: Secrets in the Family: Genetic Privacy 61; Professional responsibilities 63; Disclosure decisions within the family 65; Boundaries between Freda and her children 71; Other family members 76; Concluding remarks 80; Assignment of harm 81; Privileging the genetic family 84; Construction of family mythologies 87; Chapter 5: Power and Responsibility: Third-Party Access and Patenting 91; Genetic information and insurance 92; Access by Freda's employers 97; Widening the circle of responsibility 100; Real life in the business world 103; Patenting and scientific research 109; Freda's scientists 116; Concluding remarks 121; Power 121; Context 123; Chapter 9: Making Moral Evaluations 191; Moral decisions 192; Reason and emotion in moral evaluation 195; The importance of context and relationship 200; Good enough decisions 206; The importance of time 208; Approaches to moral evaluation 210; Values and principles 213; Discernment 219; Moral vocabulary and moral competence 223; Final comments 227; Appendix 1 235; Appendix 2 237; Appendix 3 241; Bibliography 259; Index 271