Ethical and practical issues around genetic research are of major international concern, both in academia and in the public domain. Questions concerning what interventions are possible and appropriate with the increasing amount of genetic information available, challenge our understandings of ourselves, our health and wellbeing, and the role of medical ethics, public health, surveillance and risk. However there has been little reflection on the socio-political effects of this new genetic knowledge and the changes in practice that are currently impacting on our lives.Containing contributions from key international researchers, this book examines the broader issues of genetic debates and looks at how prediction and risk assessment is being changed in the arenas of health, medicine and reproduction, bringing new insight on the dangers of surveillance, regulation and increased inequality. Developed out of the Taylor and Francis journal Critical Public Health, the book considers the implications of developments in genetics for contemporary liberal governance, as well as for the future of healthcare and public health.
Author(s): Robin Bunton, Alan Petersen
Edition: New edition
Publisher: Routledge
Year: 2005
Language: English
Pages: 209
Book Cover......Page 1
Half-Title......Page 2
Title......Page 3
Copyright......Page 4
Contents......Page 5
List of contributors......Page 7
Acknowledgements......Page 8
Genetics and governance......Page 9
Governance......Page 12
Governmentality and ethics......Page 14
Ethics, risk and governance......Page 17
Risk, population and identity......Page 22
Knowledge, governance and the future......Page 26
References......Page 30
Part I Ethics, risk and governance......Page 35
Introduction......Page 36
Projects and institutions included in the study (project code in parentheses)......Page 37
‘We have always been ethical’: the spirit of the medical profession......Page 39
The insoluble abortion question: a special case of medical ethics......Page 40
Codes of ethics and ethics committees......Page 41
‘Let’s sort this thing out!’ Measuring ethicality......Page 43
Discussion......Page 44
References......Page 47
Introduction......Page 51
The Finnish case......Page 52
Risk and the ethics of informing......Page 55
Risk individualized......Page 58
Anxiety management......Page 60
Ethics cum medical technology......Page 62
Notes......Page 63
References......Page 64
Introduction......Page 68
Visions of Finnish geneticists......Page 69
Goals of the AGU screening and opinions of the Finnish public about genetic screening......Page 70
Experiences of mothers and recommendations for the future......Page 71
Recommendation to distribute more genetic and related information......Page 72
Possibilities to improve the information distributed to subjects of the AGU screening......Page 73
How Bayesian decision analysis deals with implied problems......Page 74
Shortcomings in information distribution as a problem of liberal government......Page 76
Solution or further problems?......Page 77
Acknowledgements......Page 78
References......Page 79
Introduction......Page 82
Genetic testing as a neoliberal technique of governance......Page 83
Using governmentality to understand individuals’ experiences of genetic testing......Page 84
The duty to know genetic risk ‘being aware’......Page 85
The duty to manage genetic risk; ‘taking an active role in health’......Page 86
The duty to inform family members of inherited risk: genetic testing as familial obligation......Page 87
Doing the right thing? Ambivalence about ‘carrying’ genetic risk information......Page 88
Discussion......Page 90
Conclusion......Page 91
References......Page 92
Part II Risk, population and identity......Page 96
Introduction......Page 97
Medical genetics and eugenics: continuity or discontinuity?......Page 98
Risk discourse and genetic testing......Page 100
Genetic responsibility and the government of the self......Page 101
Acknowledgements......Page 103
References......Page 104
Introduction......Page 108
The sample......Page 109
Data collection and analysis......Page 110
Surveillance medicine: organising genetics in the community......Page 111
Reclaiming the genetics agenda: containing diversity and shaping bodies......Page 115
Contextualizing the links: genetics, gender and female bodies......Page 117
Conclusion......Page 118
References......Page 119
Introduction......Page 122
Prenatal diagnosis: a disability rights critique......Page 123
Is prenatal testing just a natural extension of good prenatal care?......Page 127
send to the rest of society about the value placed on its disabled citizens? .........Page 128
Prenatal testing and people with learning difficulties......Page 129
Conclusion......Page 131
References......Page 133
Introduction......Page 136
Theories of a genetic underclass......Page 137
The study......Page 140
Ann......Page 141
Alice......Page 143
Hannah......Page 144
Lily......Page 145
Conclusion......Page 146
Acknowledgements......Page 147
References......Page 148
Part III Knowledge, governance and the future......Page 151
Public Health......Page 152
The opportunities......Page 153
Ozone and the melanoma gene......Page 154
Bladder cancer and chemical workers......Page 156
Haemochromatosis......Page 157
Individuals and the state......Page 158
The dangers......Page 159
Conclusion......Page 163
References......Page 164
Introduction......Page 166
Code dreams......Page 167
Genetic research undermines biodigital notions: variability, heterogeneity, complexity......Page 168
Inadequacy of quantitative response to qualitative complexity......Page 169
Internal variability of disease and gene ‘entities’......Page 170
Context heterogeneity is intrinsic to disease manifestations......Page 171
Biological complexity and critiques of geneticization......Page 172
Impact of models on productivity......Page 173
Claims versus capabilities......Page 174
Competing shifts to genetic complexity......Page 175
Conclusion: genetics in a larger context......Page 177
References......Page 178
Introduction......Page 183
From genomics to post-genomics......Page 184
Governing genomics I: issues of research and industrial development......Page 186
Governing genomics II: cultural issues......Page 190
Patenting......Page 191
Genetic testing, genetic information and beyond......Page 193
Conclusion......Page 196
References......Page 199
Index......Page 202
