Ethical Challenges in Genomics Research

A Guide to Understanding Ethics in Context
2012
ISBN: 978-3-642-23698-3
Verlag: Springer

Buch, Englisch, 234 Seiten, HC runder Rücken kaschiert, Format (B × H): 160 mm x 241 mm, Gewicht: 541 g

New developments in science and technology have resulted in shifting ethical challenges in many areas including in genomics research. This book enables those who are involved in genomics research, whether as researcher, participant or policy maker, to understand the ethical issues currently developing in this field and to participate actively in these important debates. A clear account is given of how science and technology are outstripping the capacity of previous ethical regulations to cope with current issues, together with practical illustrations of possible ways forward. Key ethical ideas are presented, drawing on the history of research regulation and on an account of the particular challenges arising in the field of genomics. The book uses a grounded, practical approach to explaining ethical concepts and issues which is geared to enhancing interdisciplinary dialogue. Its broad approach to ethical issues includes relevant considerations from social psychology and there is a particular emphasis on understanding the problems of ethical regulations and practice in the institutional and social context of research. A glossary and numerous text boxes explaining relevant terms and key ideas help to make the work an invaluable resource for both beginners and experts in the field.

Zielgruppe

Research

Autoren/Hrsg.

Boddington, Paula

Fachgebiete

• Naturwissenschaften Biowissenschaften Biowissenschaften Bioethik, Tierethik
• Geisteswissenschaften Philosophie Angewandte Ethik & Soziale Verantwortung Medizinische Ethik
• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Medizinische Ethik
• Sozialwissenschaften Psychologie Allgemeine Psychologie Sozialpsychologie
• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Vorklinische Medizin: Grundlagenfächer Humangenetik
• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Public Health, Gesundheitsmanagement, Gesundheitsökonomie, Gesundheitspolitik
• Naturwissenschaften Biowissenschaften Biowissenschaften Genetik und Genomik (nichtmedizinisch)
• Geisteswissenschaften Philosophie Angewandte Ethik & Soziale Verantwortung Bioethik, Tierethik

Inhaltsverzeichnis

Chapter 1: The ‘ethics job’

Abstract

1.1 The role of the ‘in-house’ ethicist and how this book came about

1.2 Research in genomics

1.2.1 Genetics and genomics

1.2.2 A genomics research project: the Procardis consortium

1.2.3 Varieties of genomics research

1.3 Ethical debate in genomics

1.4 Putting philosophy to work in ethics and genomics

1.4.1 Careful attention to steps in argument

1.4.2 Matching up theory with experience

1.4.3 Developing moral thought

1.5 Conclusions

1.6 Study questions

1.7 Coming up next

 

Chapter 2: Why ethics in genetics? Why ethics in research? The case of genomics research

Abstract

2.1 A brief history of the ethical regulation of research

2.2 An equally brief history of ethics in genetics

2.2.1 Worries about eugenics

2.2.2 Genetics: the spectre of ‘race’

2.2.3 Genetics and reproduction

2.2.4 Genetics, life and identity

2.3 Meet ELSI

2.4 Genetic exceptionalism: too much ethics?

2.5 Human subjects and subjects of research

2.6 Lessons from research abuses and open debate

2.7 Researchers facing ethical issues: accounts from the front line

2.7.1 Researchers behaving well: detective work amongst the Mormons

2.7.2 Researchers behaving well: warning the NIH about privacy issues

2.7.3 Researchers behaving well: what Watson didn’t want to know

2.8 Epilogue: what can we learn from good behaviour?

2.9 Conclusions

2.10 Study questions

2.11 Coming up next

 

Chapter 3: What ethics is, and how we are going to proceed

Abstract

3.1 What ethics is not: clearing away confusion

3.1.2 The business of Research Ethics Committees

3.1.2.1 RECs are advocates for the subjects of research

3.1.2.2 Ethics draws on a wider range of issues than do many RECs

3.1.2.3 RECs, rules and ethics

3.1.2.4 RECs as ‘hurdles’

3.1.2.5 A note on ethical ‘clearance’ by RECs

3.1.2.6 Ethics and RECs: to summarize

3.1.3 ELSI and ethics

3.1.4 A note on ‘improving standards’

3.1.5 The practical goals of ethics

3.2 What ethics is

3.2.1 Universal ethics and ethical relativism

3.2.2 Thinking right and doing right: moral motivation

3.2.3 What can we hope for in ethics?

3.2.4 Ethical values and other values: knowledge and scientific progress

3.2.5 The case of the ‘missing ethics’

3.2.6 Reasoning in ethics: a very brief summary

3.2.7 Empirical work in ethics

3.3 Conclusions

3.4 Study questions

3.5 Coming up next

 

Chapter 4: Starting analysis in ethics: a practical guide

Abstract

4.1 Introduction: how to use this chapter

4.2 Critical reading in ethics: some strategies

4.3 Reading an article on ethics: some preliminaries

4.3.1 What journal?

4.3.2 The range of work in ethics

4.3.3 Authors and authority

4.3.4 Authors’ disciplinary backgrounds and affiliations

4.4 Some basic questions to ask as you are reading

4.4.1 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 values

4.4.4 What conclusions, if any, are drawn?   

4.5 Looking for assumptions: presenting positions and framing texts

4.5.1 Common framings in genetics and genomics: speed and ‘future promise’

4.6 Conclusions

4.7 Study questions

4.8 Coming up next

 

Chapter 5: Research ethics and challenges from genomics: an overview of the issues

Abstract

5.1 Introduction

5.1.1 Genomics research and the traditional basis of research ethics

5.1.2 Potential issues in genomics research: informational harms

5.1.3 Research networks

5.1.4 A square peg in a round hole? Difficulties imposed by applying standard regulations of research ethics to genomics research

5.2 Ethical issues

5.2.1 Informed consent: complexity of information and rapid change

5.2.2 Informed consent: individuals, families and populations

5.2.3 Withdrawal from genomics research

5.2.4 Confidentiality and privacy in genomics research: new challenges to data protection

5.2.5 Confidentiality and privacy in genomics research: whose confidentiality, whose privacy?

5.2.6 Feedback of findings in genomics research

5.2.7 Benefits sharing in genomics research

5.2.8 Genomics research, ancestry and race

5.2.8.1 Can genomics information be inherently ‘bad’?

5.2.9 Public Health Genomics

5.3 Ethical issues in social science research: lessons for genomics research

5.4 A note on technology and ethics

5.5 Conclusions

5.6 Study questions

5.7 Coming up next

 

Chapter 6: Autonomy and its limits: the view from genetics

Abstract

6.1 Introduction

6.2 What is autonomy?

6.2.1 Descriptive and normative accounts of autonomy

6.2.2 Mere choice – or reasoned choice?

6.2.3 Negative and positive accounts of autonomy

6.2.4 The domain of autonomy: self, body, life, information

6.2.5 Autonomy, community and other values

6.2 6 Alternative ways of valuing and protecting the individual

6.3 Autonomy in research ethics: research upon autonomy

6.3.1 Milgram’s obedience experiments

6.3.2 Moral conceit: what we don’t know about ourselves

6.3.3 The fragility of autonomy

6.3.4 Consent, authority and institutions

6.3.5 Consent, conscience and persuasion

6.3.6 The institutionalisation of consent

6.4 Conclusions

6.5 Study questions

6.6 Coming up next

 

Chapter 7: The social and institutional context of ethics

Abstract

7.1 Introduction

7.2 Science in a social context

7.2.1 Science and money

7.2.2 Scientific teamwork

7.2.2 Science and wider society

7.3 Institutional influences and authority

7.4 Social influences on moral action

7.4.1 Institutional ethics: Administrative Evil

7.5 Hindrances to ethical action and what to do about them

7.5.1 Time

7.5.2 Dehumanisation

7.5.3 Social conformity

7.5.4 Moral disengagement

7.5.5 The diffusion of responsibility

7.5.6 Whistleblowers

7.6 Conclusions

7.7. Study questions

7.8 Coming up next

           

Chapter 8: Respect for persons in research and in genetics

Abstract

8.0 Study question

8.1 Introduction

8.2 Varieties of respect: diverse understandings of the concept of respect for persons

8.3 Background: debate about feedback of research results

8.4 The use and misuse of ‘respect for persons’ in a current debate in genomics research ethics

8.5 The use of science in ethical debate

8.6 The need for detailed consideration of different cases

8.7 Conclusions

8.8 Study questions

8.8 Coming up next

 

Chapter 9: Responsibilities of researchers in genomics

Abstract

9.1 Introduction

9.2 Responsibility for health

9.3 Responsibilities of the medical profession

9.4 Responsibilities of medical researchers

9.5 Recent calls for researchers in genomics to take on expanding responsibilities

9.6 The nature of responsibility: ‘chains of obligation’ in research networks

9.7 Responsibilities of research subjects and genomics research

9.8 Legal notions of responsibility: the ‘duty of care’ of genomics researchers

9.9 Moral responsibility: some lessons from psychology

9.9.1 Ways in which we abdicate responsibility

9.9.2 Ideology and responsibility

9.9.3 How can responsible behaviour be fostered?

9.10 Conclusions

9.11 Study questions

9.12 Coming up next

 

Chapter 10: Data sharing in genomics

Abstract

10.1 Introduction

10.2 Reasons to share data: views from policy and practice

10.3 Data sharing and scientific practice

10.3.1 Stewardship of data

10.3.2 Rewards, sanctions and the scientific community

10.4 The value of knowledge and the value of sharing knowledge

10.5 Reasons not to share: privacy and the control of information

10.6 Do we own our genetic information?

10.7 Values in sharing knowledge: summary and analysis

10.8 Conclusions

10.9 Study questions

 

Glossary

Abbreviations

Index of text boxes

Subject index