Ethical Challenges in Genomics Research (eBook)

Chapter 1: The ‘ethics job’Abstract1.1 The role of the ‘in-house’ ethicist and how this book came about1.2 Research in genomics1.2.1 Genetics and genomics1.2.2 A genomics research project: the Procardis consortium1.2.3 Varieties of genomics research1.3 Ethical debate in genomics1.4 Putting philosophy to work in ethics and genomics1.4.1 Careful attention to steps in argument1.4.2 Matching up theory with experience1.4.3 Developing moral thought1.5 Conclusions1.6 Study questions1.7 Coming up next Chapter 2: Why ethics in genetics? Why ethics in research? The case of genomics researchAbstract2.1 A brief history of the ethical regulation of research2.2 An equally brief history of ethics in genetics2.2.1 Worries about eugenics2.2.2 Genetics: the spectre of ‘race’2.2.3 Genetics and reproduction2.2.4 Genetics, life and identity2.3 Meet ELSI2.4 Genetic exceptionalism: too much ethics?2.5 Human subjects and subjects of research2.6 Lessons from research abuses and open debate2.7 Researchers facing ethical issues: accounts from the front line2.7.1 Researchers behaving well: detective work amongst the Mormons2.7.2 Researchers behaving well: warning the NIH about privacy issues2.7.3 Researchers behaving well: what Watson didn’t want to know2.8 Epilogue: what can we learn from good behaviour?2.9 Conclusions2.10 Study questions2.11 Coming up next Chapter 3: What ethics is, and how we are going to proceedAbstract3.1 What ethics is not: clearing away confusion 3.1.2 The business of Research Ethics Committees3.1.2.1 RECs are advocates for the subjects of research3.1.2.2 Ethics draws on a wider range of issues than do many RECs3.1.2.3 RECs, rules and ethics3.1.2.4 RECs as ‘hurdles’3.1.2.5 A note on ethical ‘clearance’ by RECs3.1.2.6 Ethics and RECs: to summarize3.1.3 ELSI and ethics3.1.4 A note on ‘improving standards’3.1.5 The practical goals of ethics3.2 What ethics is3.2.1 Universal ethics and ethical relativism3.2.2 Thinking right and doing right: moral motivation3.2.3 What can we hope for in ethics?3.2.4 Ethical values and other values: knowledge and scientific progress3.2.5 The case of the ‘missing ethics’3.2.6 Reasoning in ethics: a very brief summary3.2.7 Empirical work in ethics3.3 Conclusions3.4 Study questions3.5 Coming up next Chapter 4: Starting analysis in ethics: a practical guideAbstract4.1 Introduction: how to use this chapter4.2 Critical reading in ethics: some strategies4.3 Reading an article on ethics: some preliminaries4.3.1 What journal?4.3.2 The range of work in ethics4.3.3 Authors and authority4.3.4 Authors’ disciplinary backgrounds and affiliations4.4 Some basic questions to ask as you are reading4.4.1 Where in the text can you find arguments and evidence for positions? 4.4.2 Key concepts and terms used 4.4.3 What words are used? Same thing, different descriptions, different values4.4.4 What conclusions, if any, are drawn?    4.5 Looking for assumptions: presenting positions and framing texts4.5.1 Common framings in genetics and genomics: speed and ‘future promise’4.6 Conclusions4.7 Study questions4.8 Coming up next Chapter 5: Research ethics and challenges from genomics: an overview of the issuesAbstract5.1 Introduction5.1.1 Genomics research and the traditional basis of research ethics5.1.2 Potential issues in genomics research: informational harms5.1.3 Research networks5.1.4 A square peg in a round hole? Difficulties imposed by applying standard regulations of research ethics to genomics research5.2 Ethical issues5.2.1 Informed consent: complexity of information and rapid change5.2.2 Informed consent: individuals, families and populations5.2.3 Withdrawal from genomics research5.2.4 Confidentiality and privacy in genomics research: new challenges to data protection5.2.5 Confidentiality and privacy in genomics research: whose confidentiality, whose privacy?5.2.6 Feedback of findings in genomics research5.2.7 Benefits sharing in genomics research5.2.8 Genomics research, ancestry and race5.2.8.1 Can genomics information be inherently ‘bad’?5.2.9 Public Health Genomics5.3 Ethical issues in social science research: lessons for genomics research5.4 A note on technology and ethics5.5 Conclusions5.6 Study questions5.7 Coming up next Chapter 6: Autonomy and its limits: the view from geneticsAbstract6.1 Introduction6.2 What is autonomy? 6.2.1 Descriptive and normative accounts of autonomy6.2.2 Mere choice – or reasoned choice?6.2.3 Negative and positive accounts of autonomy6.2.4 The domain of autonomy: self, body, life, information6.2.5 Autonomy, community and other values6.2 6 Alternative ways of valuing and protecting the individual6.3 Autonomy in research ethics: research upon autonomy6.3.1 Milgram’s obedience experiments6.3.2 Moral conceit: what we don’t know about ourselves6.3.3 The fragility of autonomy6.3.4 Consent, authority and institutions6.3.5 Consent, conscience and persuasion6.3.6 The institutionalisation of consent6.4 Conclusions6.5 Study questions 6.6 Coming up next Chapter 7: The social and institutional context of ethicsAbstract7.1 Introduction7.2 Science in a social context7.2.1 Science and money 7.2.2 Scientific teamwork7.2.2 Science and wider society7.3 Institutional influences and authority7.4 Social influences on moral action7.4.1 Institutional ethics: Administrative Evil7.5 Hindrances to ethical action and what to do about them7.5.1 Time7.5.2 Dehumanisation7.5.3 Social conformity7.5.4 Moral disengagement7.5.5 The diffusion of responsibility7.5.6 Whistleblowers7.6 Conclusions7.7. Study questions7.8 Coming up next            Chapter 8: Respect for persons in research and in geneticsAbstract8.0 Study question8.1 Introduction8.2 Varieties of respect: diverse understandings of the concept of respect for persons8.3 Background: debate about feedback of research results8.4 The use and misuse of ‘respect for persons’ in a current debate in genomics research ethics8.5 The use of science in ethical debate8.6 The need for detailed consideration of different cases8.7 Conclusions8.8 Study questions8.8 Coming up next Chapter 9: Responsibilities of researchers in genomicsAbstract9.1 Introduction9.2 Responsibility for health9.3 Responsibilities of the medical profession9.4 Responsibilities of medical researchers9.5 Recent calls for researchers in genomics to take on expanding responsibilities9.6 The nature of responsibility: ‘chains of obligation’ in research networks9.7 Responsibilities of research subjects and genomics research9.8 Legal notions of responsibility: the ‘duty of care’ of genomics researchers9.9 Moral responsibility: some lessons from psychology9.9.1 Ways in which we abdicate responsibility9.9.2 Ideology and responsibility9.9.3 How can responsible behaviour be fostered?9.10 Conclusions9.11 Study questions9.12 Coming up next Chapter 10: Data sharing in genomicsAbstract10.1 Introduction10.2 Reasons to share data: views from policy and practice10.3 Data sharing and scientific practice10.3.1 Stewardship of data10.3.2 Rewards, sanctions and the scientific community10.4 The value of knowledge and the value of sharing knowledge10.5 Reasons not to share: privacy and the control of information10.6 Do we own our genetic information?10.7 Values in sharing knowledge: summary and analysis10.8 Conclusions10.9 Study questions GlossaryAbbreviationsIndex of text boxesSubject index