The Handbook of Genetics and Society: Mapping the New Genomic Era (Genetics and Society)

Front Cover
......Page 1
Title Page
......Page 6
Copyright
......Page 7
Contents......Page 8
Tables......Page 12
Boxes......Page 13
Editors......Page 14
Contributors......Page 15
Acknowledgements......Page 27
1. Genetics and society......Page 28
Re-thinking bio-economies......Page 31
Rethinking innovation......Page 33
References......Page 40
Section One: Biomedical applications of new genetic technologies......Page 42
2. Introduction......Page 44
References......Page 46
Biomedicalisation theory: the new genetics and identities......Page 48
Biomedicalising genetic health, disease, risk and enhancement......Page 51
Genetics, health social movements and collective technoscientific identities......Page 55
Identities rooted in the genetics of ‘race’, geographic ancestry and aspects of human behaviours......Page 57
Conclusions: genetics and the biomedicalisation of health, disease and identity......Page 59
Notes......Page 60
References......Page 61
Stem cells and social science......Page 68
Towards a social science of translational research......Page 70
Reflections on the ethics of embryonic stem cells and translational research......Page 71
From bench to bedside? Expectations and the field of stem cell translation......Page 74
Embryonic stem cells, boundary-work and boundary objects......Page 76
Discussion......Page 79
Some final thoughts …......Page 80
References......Page 82
Introduction......Page 86
On choice and ambivalence: frames, echoes and context......Page 90
The sociocultural places of reproductive genetics......Page 95
Conclusion......Page 98
References......Page 99
Technology and terminology......Page 103
Case studies......Page 104
Discussion......Page 111
Notes......Page 116
References......Page 117
Why and how ngx?......Page 121
A case of genomics hype?......Page 122
Applications for the individual: ‘tailored’ dietary advice......Page 123
Autonomy......Page 124
Sport......Page 125
Public health......Page 126
Acknowledgements......Page 128
References......Page 129
Section Two: Commercialisation......Page 132
8. Introduction......Page 134
References......Page 136
Introduction......Page 137
1 Making Europe safe for agbiotech......Page 138
2 Agri-efficiency as a solution or hazard?......Page 140
3 National controversies: agbiotech vs sustainable agriculture......Page 142
4 EU-wide regulatory conflicts......Page 146
5 Market forces out GM products......Page 148
6 Conclusion......Page 149
References......Page 151
1 Introduction......Page 154
2 Ethical and policy framework......Page 155
3 Comparative study of international approaches......Page 160
Appendix 1 Main international approaches......Page 165
Appendix 2......Page 166
References......Page 168
1 The development of the bioeconomy and the promise of genomics......Page 172
2 The impact of genomics on the pharmaceutical industry......Page 178
3 The changing place of genomics......Page 182
4 Conclusion: understanding the impact of genomics on the pharmaceutical and biotechnology sectors......Page 185
Acknowledgements......Page 186
References......Page 187
Introduction......Page 190
The state in the knowledge economy......Page 192
Markets in the knowledge economy......Page 194
Knowledge networks in the bioeconomy......Page 198
Conclusions......Page 203
Appendix 1......Page 205
References......Page 207
Section Three: Representations......Page 208
13. Introduction......Page 210
References......Page 212
Who are stakeholders?......Page 214
Genomics as sites for representation......Page 216
Articulating visions, values and goals......Page 217
Frames, names and claims......Page 218
Reconstituting identities......Page 220
Reframing risks and benefits and managing uncertainties......Page 221
Representing new forms of knowledge production......Page 222
Representations, policy frames and new models of governance and accountability......Page 223
Conclusions......Page 224
Notes......Page 225
References......Page 226
1 Introduction......Page 230
2 The impetus and framework for research......Page 231
3 Review of key areas of research......Page 237
Notes......Page 243
References......Page 244
Introduction......Page 249
Image science and the concept of species......Page 251
Transgenics: technoscientific developments......Page 253
Transgenics and visual art......Page 254
Transgenics, advertising and diagramming......Page 255
Transgenics: issues and reflections......Page 256
Cellular agency in bioscience and bioart......Page 258
Scaffolding life......Page 259
Tissue Engineering/SymbioticA/TC&A......Page 261
Bioteknica and teratoma......Page 262
Fetishising the relic......Page 263
Cross-talk: in and out of the lab......Page 264
Future/natural: experiments on the bio-frontier......Page 268
References......Page 270
17. Genes in our knot......Page 274
From not in our genes to genes in our knot......Page 275
The music and art of genes......Page 279
A farewell to razors......Page 280
Conclusion and illusion......Page 283
The Illusion......Page 284
References......Page 285
Section Four: Regulation......Page 288
18. Introduction: Expressing the gene: the discursive and institutional regulation of genetics......Page 290
References......Page 292
Introduction......Page 294
Regulating genetics......Page 296
Minimalist intervention......Page 299
Regulation by law......Page 300
Supra-national regulation......Page 302
Human rights......Page 304
Bioethics......Page 305
Conclusion......Page 306
References......Page 307
Introduction......Page 310
Biolegality: the co-production of law, science and suspect bodies......Page 312
Fear, fallibility and finality......Page 320
Conclusion......Page 323
Notes......Page 324
References......Page 325
Introduction......Page 329
A biobank by any other name?......Page 330
Pre-existing mechanisms of governance......Page 332
New modes of ethics and governance......Page 333
Legitimacy, trust and participation......Page 335
Commercial access: public and patient response......Page 338
Property rights......Page 340
Benefit-sharing......Page 341
Conclusion and outlook......Page 342
References......Page 343
Section Five: Bioethics and genetics......Page 346
22. Introduction......Page 348
References......Page 350
Introduction......Page 351
Privacy protection......Page 355
Recommended changes to privacy law......Page 361
Recommended changes to related laws......Page 367
Glossary......Page 371
Notes......Page 372
References......Page 374
The eugenic beginnings of HGE......Page 376
The birth of the somatic/germline and disease/enhancement distinctions......Page 379
The instability of the disease/enhancement distinction......Page 382
Technological contributions to ethical debates......Page 383
The new reform eugenics......Page 384
Conclusion......Page 390
Notes......Page 391
References......Page 392
Genetic and reproductive technologies and disability......Page 394
Genetics/eugenics......Page 395
Theories of disability and how bioethics uses them......Page 396
Bioethical diversity......Page 400
Disability critique of prenatal and preimplantation genetic diagnosis......Page 402
Genetic choice and ‘choosing disability’......Page 404
Future directions......Page 405
References......Page 406
1 Is there anything new under the sun?......Page 409
2 What is it and what is it good for?......Page 410
3 Sceptical about what?......Page 413
4 The context of ethical concerns......Page 414
5 So perhaps there is something new after all......Page 422
References......Page 423
Section Six: Diversity and justice......Page 426
27. Introduction......Page 428
References......Page 430
1 Religion, nationhood, and ‘culture’: on collective identities......Page 431
2 Conclusion......Page 439
Notes......Page 441
References......Page 442
Diversity projects......Page 449
From blood to DNA......Page 452
Genetic markers: more than a copy......Page 453
The intertwinement of nature and technology......Page 454
From differences to similarities and back......Page 455
Built-in diversity......Page 456
The extravagance of genetics and the unsettledness of race......Page 457
Notes......Page 460
References......Page 461
Introduction......Page 464
Origins and development of eugenics......Page 465
The historiographical tradition......Page 467
Eugenics and the science of genetics......Page 468
Eugenics and the state – the Scandinavian experience......Page 470
Conclusion......Page 472
References......Page 473
1 Introduction......Page 475
2 Defining ‘dignity’......Page 476
3 Applications of human dignity to biotechnology......Page 478
4 Conclusion......Page 484
References......Page 485
Section Seven: New forms of knowledge production......Page 490
32. Introduction......Page 492
References......Page 494
Introduction......Page 496
1 Data-centric biology......Page 497
2 Data sharing through bioinformatics......Page 498
cation: bio-ontologies......Page 500
4 Bio-ontology consortia: institutionalising collaboration......Page 503
5 Conclusion: centralising regulation to distribute data......Page 507
Notes......Page 509
References......Page 510
Introduction......Page 513
Producing genetic knowledge......Page 515
Novelty in genetic technologies......Page 517
Socio-technical innovation: diagnostic tests, pharmacogenetics and cloning in social contexts......Page 518
Governance and accountability......Page 523
Conclusion......Page 525
References......Page 526
1 Introduction: what do we/they mean by platform?......Page 529
2 Socio-economic hybrids......Page 532
3 Bio-clinical hybrids......Page 537
4 Conclusion: articulating socio-economic and bio-clinical hybrids......Page 543
Notes......Page 544
References......Page 545
Index......Page 548