Ethical challenges in genomics research: a guide to understanding ethics in context
Gespeichert in:
| 1. Verfasser: | |
|---|---|
| Format: | Buch |
| Sprache: | English |
| Veröffentlicht: |
Berlin ; Heidelberg
Springer
[2012]
|
| Schlagworte: | |
| Online-Zugang: | Inhaltstext Inhaltsverzeichnis |
| Beschreibung: | Hier auch später erschienene, unveränderte Nachdrucke |
| Beschreibung: | xiv, 232 Seiten |
| ISBN: | 9783642236983 9783642427190 |
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IMAGE 1
CONTENTS
1 THE "ETHICS JOB" 1
1.1 THE ROLE O F THE "IN-HOUSE" ETHICIST AND HOW THIS BOOK CAME ABOUT 1
1.2 RESEARCH IN GENOMICS 3
1.2.1 GENETICS AND GENOMICS 3
1.2.2 A GENOMICS RESEARCH PROJECT: THE PROCARDIS CONSORTIUM 4 1.2.3
VARIETIES O F GENOMICS RESEARCH 4
1.3 ETHICAL DEBATE IN GENOMICS 5
1.4 PUTTING PHILOSOPHY TO WORK IN ETHICS AND GENOMICS 7
1.4.1 CAREFUL ATTENTION TO STEPS IN ARGUMENTS 7
1.4.2 MATCHING UP THEORY WITH EXPERIENCE 8
1.4.3 DEVELOPING MORAL THOUGHT 10
1.5 CONCLUSIONS 12
1.6 STUDY QUESTIONS 13
1.7 COMING UP NEXT 13
REFERENCES 13
2 WHY RESEARCH ETHICS? WHY ETHICS IN GENETICS? THE CASE O F GENOMICS
RESEARCH 15
2.1 A BRIEF HISTORY O F THE ETHICAL REGULATION O F RESEARCH 15
2.2 AN EQUALLY BRIEF HISTORY O F ETHICAL ISSUES IN GENETICS 18
2.2.1 WORRIES ABOUT EUGENICS 18
2.2.2 GENETICS AND POPULATIONS: THE SPECTRE O F "RACE" 21
2.2.3 GENETICS AND REPRODUCTION 22
2.2.4 GENETICS, LIFE, AND IDENTITY 22
2.3 MEET ELSI 24
2.4 TOO MUCH ETHICS? 26
2.5 HUMAN SUBJECTS AND SUBJECTS O F RESEARCH 28
2.6 LESSONS FROM RESEARCH ABUSES AND OPEN DEBATE 32
2.7 RESEARCHERS FACING ETHICAL ISSUES: ACCOUNTS FROM THE FRONT LINE 33
IX
HTTP://D-NB.INFO/1014073162
IMAGE 2
X CONTENTS
2.7.1 RESEARCHERS BEHAVING WELL: DETECTIVE WORK AMONGST
THE MORMONS 34
2.7.2 RESEARCHERS BEHAVING WELL: WARNING THE NIH ABOUT PRIVACY RISKS 37
2.7.3 RESEARCHERS BEHAVING WELL: WHAT WATSON DIDN'T WANT TO KNOW 38
2.8 EPILOGUE: WHAT CAN WE LEARN FROM GOOD BEHAVIOUR? 39
2.9 CONCLUSIONS 39
2.10 STUDY QUESTIONS 4 0
2.11 COMING UP NEXT 4 0
REFERENCES 4 0
3 WHAT ETHICS IS, WHAT IT IS NOT, AND HOW WE ARE GOING TO PROCEED 43
3.1 WHAT ETHICS IS NOT: CLEARING AWAY CONFUSION 43
3.1.1 THE BUSINESS OF RESEARCH ETHICS COMMITTEES 4 3
3.1.2 ELSI AND ETHICS 47
3.1.3 ETHICS AIMS TO IMPROVE STANDARDS ? 48
3.1.4 A NOTE ABOUT THE PRACTICAL GOALS OF ETHICS 50
3.2 WHAT ETHICS IS 50
3.2.1 UNIVERSAL ETHICS OR RELATIVISTIC ETHICS? 52
3.2.2 THINKING RIGHT AND DOING RIGHT: MORAL MOTIVATION 53
3.2.3 WHAT CAN WE HOPE FOR IN ETHICS? 53
3.2.4 ETHICS AND OTHER VALUES: THE VALUE OF KNOWLEDGE AND THE VALUE O F
SCIENTIFIC PROGRESS 54
3.2.5 THE CASE OF THE "MISSING ETHICS" 56
3.2.6 REASONING IN ETHICS: A VERY BRIEF SUMMARY 57
3.2.7 EMPIRICAL WORK IN ETHICS 60
3.3 CONCLUSIONS 61
3.4 STUDY QUESTIONS 61
3.5 COMING UP NEXT 62
REFERENCES 62
4 STARTING ANALYSIS IN ETHICS: A PRACTICAL GUIDE 65
4.1 INTRODUCTION: HOW TO USE THIS CHAPTER 65
4.2 CRITICAL READING IN ETHICS: SOME STRATEGIES 66
4.3 READING AN ARTICLE ON ETHICS: SOME PRELIMINARIES 67
4.3.1 WHAT JOURNAL? 68
4.3.2 THE RANGE O F WORK IN ETHICS 68
4.3.3 AUTHORS AND AUTHORITY 69
4.3.4 AUTHORS' DISCIPLINARY BACKGROUNDS AND AFFILIATIONS 69
4.4 SOME BASIC QUESTIONS TO ASK AS YOU ARE READING 7 0
4.4.1 WHERE IN THE TEXT CAN YOU FIND ARGUMENTS AND EVIDENCE FOR
POSITIONS? 7 0
IMAGE 3
CONTENTS XI
4.4.2 KEY CONCEPTS AND TERMS USED 71
4.4.3 WHAT WORDS ARE USED? SAME PHENOMENON, DIFFERENT DESCRIPTIONS,
DIFFERENT VALUES 72
4.4.4 WHAT CONCLUSIONS, IF ANY, ARE DRAWN? 73
4.5 LOOKING FOR ASSUMPTIONS: PRESENTING POSITIONS AND FRAMING TEXTS 74
4.5.1 COMMON FRAMINGS IN GENETICS AND GENOMICS: SPEED AND "FUTURE
PROMISE" 77
4.6 CONCLUSIONS 79
4.7 STUDY QUESTIONS 79
4.8 COMING UP NEXT 81
REFERENCES 81
5 AN OVERVIEW O F RESEARCH ETHICS AND CHALLENGES FROM GENOMICS . . . 83
5.1 INTRODUCTION: SOME CHALLENGES IN GENOMICS RESEARCH 83
5.1.1 THE TRADITIONAL BASIS OF RESEARCH ETHICS AND GENOMICS RESEARCH 84
5.1.2 POTENTIAL HARMS O F GENOMICS RESEARCH: INFORMATIONAL HARMS 84
5.1.3 RESEARCH NETWORKS 86
5.2 ETHICAL ISSUES 88
5.2.1 INFORMED CONSENT: COMPLEXITY OF INFORMATION AND RAPID CHANGE 88
5.2.2 INFORMED CONSENT: INDIVIDUALS, FAMILIES, AND POPULATIONS . 9 0
5.2.3 WITHDRAWAL FROM RESEARCH: DIFFICULT, BUT THEN, IS IT REALLY
NECESSARY IN GENOMICS? 91
5.2.4 CONFIDENTIALITY AND PRIVACY IN GENOMICS RESEARCH: NEW CHALLENGES
TO THE POWER TO PROTECT DATA 92
5.2.5 CONFIDENTIALITY AND PRIVACY IN GENOMICS RESEARCH: WHOSE
CONFIDENTIALITY, WHOSE PRIVACY? 93
5.2.6 FEEDBACK O F FINDINGS IN GENOMICS RESEARCH 93
5.2.7 BENEFIT SHARING IN GENOMICS RESEARCH 9 4
5.2.8 GENOMICS RESEARCH, ANCESTRY AND RACE 95
5.2.9 CAN GENOMICS INFORMATION BE INHERENTLY "BAD"? 97
5.2.10 PUBLIC HEALTH GENOMICS 97
5.3 ETHICAL ISSUES IN SOCIAL SCIENCE RESEARCH: PARALLELS AND LESSONS FOR
GENOMICS RESEARCH 100
5.4 A NOTE ON TECHNOLOGY AND ETHICS 101
5.5 CONCLUSIONS 103
5.6 STUDY QUESTIONS 104
5.7 COMING UP NEXT 105
REFERENCES 106
IMAGE 4
XII CONTENTS
6 AUTONOMY AND ITS LIMITS: THE VIEW FROM GENOMICS 109
6.1 INTRODUCTION 109
6.2 WHAT IS AUTONOMY? PHILOSOPHICAL ACCOUNTS OF THE NOTION OF AUTONOMY
110
6.2.1 DESCRIPTIVE AND NORMATIVE ACCOUNTS OF AUTONOMY I L L
6.2.2 MERE CHOICE: OR REASONED CHOICE? I L L
6.2.3 NEGATIVE AND POSITIVE APPROACHES TO AUTONOMY 112
6.2.4 THE DOMAIN O F AUTONOMY: SELF, BODY, LIFE, INFORMATION . . . 112
6.2.5 AUTONOMY, COMMUNITY, AND OTHER VALUES 115
6.2.6 ALTERNATIVE WAYS O F VALUING AND PROTECTING THE INDIVIDUAL NOT
BASED ON AUTONOMY 117
6.3 AUTONOMY IN RESEARCH ETHICS: RESEARCH UPON AUTONOMY 118
6.3.1 MILGRAM'S OBEDIENCE EXPERIMENTS 119
6.3.2 MORAL CONCEIT: WHAT W E DO NOT KNOW ABOUT OURSELVES . 120 6.3.3
THE FRAGILITY O F AUTONOMY 121
6.3.4 CONSENT, AUTHORITY, AND INSTITUTIONS 122
6.3.5 CONSENT, CONSCIENCE, AND PERSUASION 123
6.3.6 THE INSTITUTIONALISATION O F CONSENT 125
6.4 CONCLUSIONS 127
6.5 STUDY QUESTIONS 127
6.6 COMING UP NEXT 128
REFERENCES 129
7 THE SOCIAL AND INSTITUTIONAL SETTING O F ETHICS 131
7.1 INTRODUCTION 131
7.2 SCIENCE IN A SOCIAL CONTEXT 132
7.2.1 SCIENCE AND MONEY 132
7.2.2 SCIENTIFIC TEAMWORK 135
7.2.3 SCIENCE AND WIDER SOCIETY 135
7.3 INSTITUTIONAL INFLUENCES AND AUTHORITY 136
7.4 SOCIAL INFLUENCES ON MORAL ACTION 139
7.4.1 INSTITUTIONAL ETHICS: ADMINISTRATIVE EVIL 140
7.5 HINDRANCES TO ETHICAL ACTION AND REASONING AND WHAT TO DO ABOUT THEM
141
7.5.1 TIME 141
7.5.2 DEHUMANISATION 144
7.5.3 SOCIAL CONFORMITY 145
7.5.4 MORAL DISENGAGEMENT 146
7.5.5 THE DIFFUSION OF RESPONSIBILITY 146
7.5.6 WHISTLEBLOWERS 147
7.6 CONCLUSIONS 147
7.7 STUDY QUESTIONS 148
7.8 COMING UP NEXT 148
REFERENCES 149
IMAGE 5
CONTENTS
XLLL
8 RESPECT FOR PERSONS IN RESEARCH AND IN GENETICS 151
8.1 STUDY QUESTION 151
8.2 INTRODUCTION 152
8.3 VARIETIES O F RESPECT: DIVERGENT UNDERSTANDINGS O F THE CONCEPT OF
RESPECT FOR PERSONS 153
8.4 BACKGROUND: THE DEBATE ABOUT FEEDBACK OF RESULTS 154
8.5 THE USE AND MISUSE O F THE NOTION O F "RESPECT FOR PERSONS" IN A
CURRENT DEBATE IN GENOMICS RESEARCH ETHICS 156
8.6 CONCLUDING UNSCIENTIFIC POSTSCRIPT: PROBLEMS WITH THE USE O F
SCIENCE IN ETHICAL DEBATE 164
8.7 THE NEED FOR DETAILED CONSIDERATION OF DIFFERENT CASES 167
8.8 CONCLUSIONS 168
8.9 STUDY QUESTIONS 169
8.10 COMING UP NEXT 170
APPENDIX: PARTICIPANTS AT A WORKSHOP ON RESPECT FOR PERSONS, ST. HUGH'S
COLLEGE OXFORD, 2010 170
REFERENCES 172
9 RESPONSIBILITIES OF RESEARCHERS IN GENETICS 173
9.1 INTRODUCTION 173
9.2 RESPONSIBILITY FOR HEALTH 175
9.3 RESPONSIBILITIES O F THE MEDICAL PROFESSION 177
9.4 RESPONSIBILITIES OF MEDICAL RESEARCHERS 178
9.5 RECENT CALLS FOR RESEARCHERS IN GENOMICS TO TAKE ON EXPANDING
RESPONSIBILITIES 180
9.6 THE NATURE O F RESPONSIBILITY: "CHAINS OF RESPONSIBILITY" IN
RESEARCH NETWORKS? 182
9.7 RESPONSIBILITIES O F RESEARCH SUBJECTS AND GENOMICS RESEARCH . . .
183 9.8 LEGAL NOTIONS O F RESPONSIBILITY: THE "DUTY O F CARE" OF
GENOMICS RESEARCHERS 184
9.9 MORAL RESPONSIBILITY: SOME LESSONS FROM PSYCHOLOGY 187
9.9.1 WARNINGS FOR GENOMICS RESEARCH: WAYS IN WHICH WE ABNEGATE
RESPONSIBILITY 187
9.9.2 IDEOLOGY AND RESPONSIBILITY 189
9.9.3 HOW CAN RESPONSIBLE BEHAVIOUR BE FOSTERED? 189
9.10 CONCLUSIONS 190
9.11 STUDY QUESTIONS 191
9.12 COMING UP NEXT 192
REFERENCES 192
10 DATA SHARING IN GENOMICS 195
10.1 INTRODUCTION 195
10.2 REASONS TO SHARE GENOMICS DATA: VIEWS FROM POLICY AND PRACTICE 198
IMAGE 6
XIV CONTENTS
10.2.1 DATA SHARING AS THE NORM 198
10.2.2 IMPROVING SCIENTIFIC OUTPUTS 199
10.2.3 FOSTERING NOVELTY AND SCIENTIFIC CREATIVITY 199
10.2.4 THE VALUE O F SHARING CERTAIN SORTS OF DATA 199
10.2.5 VISIONS O F SCIENTIFIC AND OF HUMAN PROGRESS 199
10.2.6 THE VALUE OF DATA AND THE VALUE OF KNOWLEDGE 200
10.2.7 DATA SHARING AND GOOD SCIENTIFIC PRACTICE 200
10.2.8 GOOD DATA SHARING AND STEWARDSHIP 200
10.2.9 DATA SHARING AND RESEARCH PARTICIPANTS 200
10.2.10 DATA SHARING BRINGS BENEFIT TO THE PUBLIC 201
10.2.11 THE TIMING O F DATA SHARING, SPEED AND BRAKES 201
10.2.12 INTERESTS IN CONTROLLING DATA 201
10.3 DATA SHARING AND SCIENTIFIC PRACTICE 203
10.3.1 STEWARDSHIP OF DATA 204
10.3.2 REWARDS, SANCTIONS, AND THE SCIENTIFIC COMMUNITY 204 10.4 THE
VALUE O F KNOWLEDGE AND THE VALUE OF SHARING KNOWLEDGE 206
10.5 REASONS NOT TO SHARE: PRIVACY AND THE CONTROL OF PERSONAL
INFORMATION 209
10.6 DO WE OWN OUR GENETIC INFORMATION? 211
10.7 THE VALUE OF KNOWLEDGE AND THE VALUE O F SHARING KNOWLEDGE: SUMMARY
AND ANALYSIS 213
10.8 CONCLUSIONS 214
10.9 STUDY QUESTIONS 214
REFERENCES 215
AFTERWORD 217
GLOSSARY 219
ABBREVIATIONS 223
INDEX O F TEXT BOXES 225
SUBJECT INDEX 227 |
| any_adam_object | 1 |
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| dewey-search | 174.296042 |
| dewey-sort | 3174.296042 |
| dewey-tens | 170 - Ethics (Moral philosophy) |
| discipline | Biologie Philosophie Medizin |
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| id | DE-604.BV039954568 |
| illustrated | Not Illustrated |
| indexdate | 2024-07-21T00:27:23Z |
| institution | BVB |
| isbn | 9783642236983 9783642427190 |
| language | English |
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| physical | xiv, 232 Seiten |
| publishDate | 2012 |
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| publisher | Springer |
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| spelling | Boddington, Paula Verfasser (DE-588)1147985715 aut Ethical challenges in genomics research a guide to understanding ethics in context Paula Boddington Berlin ; Heidelberg Springer [2012] xiv, 232 Seiten txt rdacontent n rdamedia nc rdacarrier Hier auch später erschienene, unveränderte Nachdrucke Genanalyse (DE-588)4200230-8 gnd rswk-swf Medizinische Ethik (DE-588)4074672-0 gnd rswk-swf Genanalyse (DE-588)4200230-8 s Medizinische Ethik (DE-588)4074672-0 s DE-604 Erscheint auch als Online-Ausgabe 978-3-642-23699-0 X:MVB text/html http://deposit.dnb.de/cgi-bin/dokserv?id=3863715&prov=M&dok%5Fvar=1&dok%5Fext=htm Inhaltstext DNB Datenaustausch application/pdf http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=024812435&sequence=000001&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA Inhaltsverzeichnis |
| spellingShingle | Boddington, Paula Ethical challenges in genomics research a guide to understanding ethics in context Genanalyse (DE-588)4200230-8 gnd Medizinische Ethik (DE-588)4074672-0 gnd |
| subject_GND | (DE-588)4200230-8 (DE-588)4074672-0 |
| title | Ethical challenges in genomics research a guide to understanding ethics in context |
| title_auth | Ethical challenges in genomics research a guide to understanding ethics in context |
| title_exact_search | Ethical challenges in genomics research a guide to understanding ethics in context |
| title_full | Ethical challenges in genomics research a guide to understanding ethics in context Paula Boddington |
| title_fullStr | Ethical challenges in genomics research a guide to understanding ethics in context Paula Boddington |
| title_full_unstemmed | Ethical challenges in genomics research a guide to understanding ethics in context Paula Boddington |
| title_short | Ethical challenges in genomics research |
| title_sort | ethical challenges in genomics research a guide to understanding ethics in context |
| title_sub | a guide to understanding ethics in context |
| topic | Genanalyse (DE-588)4200230-8 gnd Medizinische Ethik (DE-588)4074672-0 gnd |
| topic_facet | Genanalyse Medizinische Ethik |
| url | http://deposit.dnb.de/cgi-bin/dokserv?id=3863715&prov=M&dok%5Fvar=1&dok%5Fext=htm http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&local_base=BVB01&doc_number=024812435&sequence=000001&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA |
| work_keys_str_mv | AT boddingtonpaula ethicalchallengesingenomicsresearchaguidetounderstandingethicsincontext |