Ethical Challenges in Genomics Research

<p>Chapter 1: The ‘ethics job’</p><p>Abstract</p><p>1.1 The role of the ‘in-house’ ethicist and how this book came about</p><p>1.2 Research in genomics</p><p>1.2.1 Genetics and genomics</p><p>1.2.2 A genomics research project: the Procardis consortium</p><p>1.2.3 Varieties of genomics research</p><p>1.3 Ethical debate in genomics</p><p>1.4 Putting philosophy to work in ethics and genomics</p><p>1.4.1 Careful attention to steps in argument</p><p>1.4.2 Matching up theory with experience</p><p>1.4.3 Developing moral thought</p><p>1.5 Conclusions</p><p>1.6 Study questions</p><p>1.7 Coming up next</p><p> </p><p>Chapter 2: Why ethics in genetics? Why ethics in research? The case of genomics research</p><p>Abstract</p><p>2.1 A brief history of the ethical regulation of research</p><p>2.2 An equally brief history of ethics in genetics</p><p>2.2.1 Worries about eugenics</p><p>2.2.2 Genetics: the spectre of ‘race’</p><p>2.2.3 Genetics and reproduction</p><p>2.2.4 Genetics, life and identity</p><p>2.3 Meet ELSI</p><p>2.4 Genetic exceptionalism: too much ethics?</p><p>2.5 Human subjects and subjects of research</p><p>2.6 Lessons from research abuses and open debate</p><p>2.7 Researchers facing ethical issues: accounts from the front line</p><p>2.7.1 Researchers behaving well: detective work amongst the Mormons</p><p>2.7.2 Researchers behaving well: warning the NIH about privacy issues</p><p>2.7.3 Researchers behaving well: what Watson didn’t want to know</p><p>2.8 Epilogue: what can we learn from good behaviour?</p><p>2.9 Conclusions</p><p>2.10 Study questions</p><p>2.11 Coming up next</p><p> </p><p>Chapter 3: What ethics is, and how we are going to proceed</p><p>Abstract</p><p>3.1 What ethics is not: clearing away confusion </p><p>3.1.2 The business of Research Ethics Committees</p><p>3.1.2.1 RECs are advocates for the subjects of research</p><p>3.1.2.2 Ethics draws on a wider range of issues than do many RECs</p><p>3.1.2.3 RECs, rules and ethics</p><p>3.1.2.4 RECs as ‘hurdles’</p><p>3.1.2.5 A note on ethical ‘clearance’ by RECs</p><p>3.1.2.6 Ethics and RECs: to summarize</p><p>3.1.3 ELSI and ethics</p><p>3.1.4 A note on ‘improving standards’</p><p>3.1.5 The practical goals of ethics</p><p>3.2 What ethics is</p><p>3.2.1 Universal ethics and ethical relativism</p><p>3.2.2 Thinking right and doing right: moral motivation</p><p>3.2.3 What can we hope for in ethics?</p><p>3.2.4 Ethical values and other values: knowledge and scientific progress</p><p>3.2.5 The case of the ‘missing ethics’</p><p>3.2.6 Reasoning in ethics: a very brief summary</p><p>3.2.7 Empirical work in ethics</p><p>3.3 Conclusions</p><p>3.4 Study questions</p><p>3.5 Coming up next</p><p> </p><p>Chapter 4: Starting analysis in ethics: a practical guide</p><p>Abstract</p><p>4.1 Introduction: how to use this chapter</p><p>4.2 Critical reading in ethics: some strategies</p><p>4.3 Reading an article on ethics: some preliminaries</p><p>4.3.1 What journal?</p><p>4.3.2 The range of work in ethics</p><p>4.3.3 Authors and authority</p><p>4.3.4 Authors’ disciplinary backgrounds and affiliations</p><p>4.4 Some basic questions to ask as you are reading</p><p>4.4.1 Where in the text can you find arguments and evidence for positions? </p><p>4.4.2 Key concepts and terms used </p><p>4.4.3 What words are used? Same thing, different descriptions, different values</p><p>4.4.4 What conclusions, if any, are drawn?    </p><p>4.5 Looking for assumptions: presenting positions and framing texts</p><p>4.5.1 Common framings in genetics and genomics: speed and ‘future promise’</p><p>4.6 Conclusions</p><p>4.7 Study questions</p><p>4.8 Coming up next</p><p> </p><p>Chapter 5: Research ethics and challenges from genomics: an overview of the issues</p><p>Abstract</p><p>5.1 Introduction</p><p>5.1.1 Genomics research and the traditional basis of research ethics</p><p>5.1.2 Potential issues in genomics research: informational harms</p><p>5.1.3 Research networks</p><p>5.1.4 A square peg in a round hole? Difficulties imposed by applying standard regulations of research ethics to genomics research</p><p>5.2 Ethical issues</p><p>5.2.1 Informed consent: complexity of information and rapid change</p><p>5.2.2 Informed consent: individuals, families and populations</p><p>5.2.3 Withdrawal from genomics research</p><p>5.2.4 Confidentiality and privacy in genomics research: new challenges to data protection</p><p>5.2.5 Confidentiality and privacy in genomics research: whose confidentiality, whose privacy?</p><p>5.2.6 Feedback of findings in genomics research</p><p>5.2.7 Benefits sharing in genomics research</p><p>5.2.8 Genomics research, ancestry and race</p><p>5.2.8.1 Can genomics information be inherently ‘bad’?</p><p>5.2.9 Public Health Genomics</p><p>5.3 Ethical issues in social science research: lessons for genomics research</p><p>5.4 A note on technology and ethics</p><p>5.5 Conclusions</p><p>5.6 Study questions</p><p>5.7 Coming up next</p><p> </p><p>Chapter 6: Autonomy and its limits: the view from genetics</p><p>Abstract</p><p>6.1 Introduction</p><p>6.2 What is autonomy? </p><p>6.2.1 Descriptive and normative accounts of autonomy</p><p>6.2.2 Mere choice – or reasoned choice?</p><p>6.2.3 Negative and positive accounts of autonomy</p><p>6.2.4 The domain of autonomy: self, body, life, information</p><p>6.2.5 Autonomy, community and other values</p><p>6.2 6 Alternative ways of valuing and protecting the individual</p><p>6.3 Autonomy in research ethics: research upon autonomy</p><p>6.3.1 Milgram’s obedience experiments</p><p>6.3.2 Moral conceit: what we don’t know about ourselves</p><p>6.3.3 The fragility of autonomy</p><p>6.3.4 Consent, authority and institutions</p><p>6.3.5 Consent, conscience and persuasion</p><p>6.3.6 The institutionalisation of consent</p><p>6.4 Conclusions</p><p>6.5 Study questions </p><p>6.6 Coming up next</p><p> </p><p>Chapter 7: The social and institutional context of ethics</p><p>Abstract</p><p>7.1 Introduction</p><p>7.2 Science in a social context</p><p>7.2.1 Science and money </p><p>7.2.2 Scientific teamwork</p><p>7.2.2 Science and wider society</p><p>7.3 Institutional influences and authority</p><p>7.4 Social influences on moral action</p><p>7.4.1 Institutional ethics: Administrative Evil</p><p>7.5 Hindrances to ethical action and what to do about them</p><p>7.5.1 Time</p><p>7.5.2 Dehumanisation</p><p>7.5.3 Social conformity</p><p>7.5.4 Moral disengagement</p><p>7.5.5 The diffusion of responsibility</p><p>7.5.6 Whistleblowers</p><p>7.6 Conclusions</p><p>7.7. Study questions</p><p>7.8 Coming up next</p><p>            </p><p>Chapter 8: Respect for persons in research and in genetics</p><p>Abstract</p><p>8.0 Study question</p><p>8.1 Introduction</p><p>8.2 Varieties of respect: diverse understandings of the concept of respect for persons</p><p>8.3 Background: debate about feedback of research results</p><p>8.4 The use and misuse of ‘respect for persons’ in a current debate in genomics research ethics</p><p>8.5 The use of science in ethical debate</p><p>8.6 The need for detailed consideration of different cases</p><p>8.7 Conclusions</p><p>8.8 Study questions</p><p>8.8 Coming up next</p><p> </p><p>Chapter 9: Responsibilities of researchers in genomics</p><p>Abstract</p><p>9.1 Introduction</p><p>9.2 Responsibility for health</p><p>9.3 Responsibilities of the medical profession</p><p>9.4 Responsibilities of medical researchers</p><p>9.5 Recent calls for researchers in genomics to take on expanding responsibilities</p><p>9.6 The nature of responsibility: ‘chains of obligation’ in research networks</p><p>9.7 Responsibilities of research subjects and genomics research</p><p>9.8 Legal notions of responsibility: the ‘duty of care’ of genomics researchers</p><p>9.9 Moral responsibility: some lessons from psychology</p><p>9.9.1 Ways in which we abdicate responsibility</p><p>9.9.2 Ideology and responsibility</p><p>9.9.3 How can responsible behaviour be fostered?</p><p>9.10 Conclusions</p><p>9.11 Study questions</p><p>9.12 Coming up next</p><p> </p><p>Chapter 10: Data sharing in genomics</p><p>Abstract</p><p>10.1 Introduction</p><p>10.2 Reasons to share data: views from policy and practice</p><p>10.3 Data sharing and scientific practice</p><p>10.3.1 Stewardship of data</p><p>10.3.2 Rewards, sanctions and the scientific community</p><p>10.4 The value of knowledge and the value of sharing knowledge</p><p>10.5 Reasons not to share: privacy and the control of information</p><p>10.6 Do we own our genetic information?</p><p>10.7 Values in sharing knowledge: summary and analysis</p><p>10.8 Conclusions</p><p>10.9 Study questions</p><p> </p><p>Glossary</p><p>Abbreviations</p><p>Index of text boxes</p><p>Subject index</p>