Cover Page

Bioinformation

BRONWYN PARRY AND
BETH GREENHOUGH











polity

Resources Series

Anthony Burke, Uranium

Peter Dauvergne & Jane Lister, Timber

Andrew Herod, Labor

Michael Nest, Coltan

Elizabeth R. DeSombre & J. Samuel Barkin, Fish

Jennifer Clapp, Food, 2nd edition

David Lewis Feldman, Water

Gavin Fridell, Coffee

Gavin Bridge & Philippe Le Billon, Oil, 2nd edition

Derek Hall, Land

Ben Richardson, Sugar

Ian Smillie, Diamonds

Adam Sneyd, Cotton

Bill Winders, Grains

Acknowledgements

We would like to thank all those who have contributed to ongoing discussions over the years on the nature of bioinformation, its emerging markets and the social, ethical and legal implications of its use as a resource in contemporary society. These include: Barbara Prainsack, Catherine Waldby, Kaushik Sunder Rajan, Nik Rose, Jenny Reardon, Gail Davies, Emma Roe, Catherine Nash, Klaus Hoeyer, Chris Philo, Sarah Whatmore, Mary Ebeling, Nick Bingham, Lochlann Jain, Steve Hinchliffe, Tim Brown and Jamie Lorimer. We have benefited tremendously from your insights, which have really helped to refine our thinking on this complex issue. Our wonderful editors at Polity, Louise Knight and Nekane Tanaka Galdos, have been so encouraging, supportive and patient, and we remain indebted to them for their creative commissioning of this work and careful stewardship to completion. Colleagues in our respective Departments of Global Health and Social Medicine at King’s College London, and Geography and the Environment at Oxford have been equally generous in their support of this project. We are very grateful to Keble College, Oxford for providing a visiting fellowship for Bronwyn that first helped us get this project off the ground. Katya Baker provided invaluable research assistance throughout, for which we give our sincere thanks.

Lastly, Bronwyn would like to thank her family – Sally, Alex and Jacob – for their unending love and for ever so patiently providing the time and space needed to conceptualize, research and write this book. She would also like to thank Beth for being such a brilliant collaborator and Andy for helping her to find time away from her young family to work on this project. Beth would like to thank Karl Benediktsson from the University of Iceland and all those who supported, participated in and contributed to her early doctoral work on Iceland’s Health Sector Database. She would like to thank Bronwyn for inviting her to be involved in this project and putting up with her erratic contributions during maternity leave. Last, but by no means least, Beth is very grateful to Andy, Molly and Fergus for allowing her the time and space to realize this work.

Abbreviations

ANTHC
Alaska Native Tribal Health Consortium
CBD
Convention on Biological Diversity
CCTV
close circuit television
CDC
Centre for Disease Control and Prevention (US)
cDNA
complementary DNA
CEPH
Centre d’étude du polymorphisme humain (France)
CF
cystic fibrosis
CFS
chronic fatigue syndrome
DNA
deoxyribonucleic acid
EGP
Estonian Genome Project
EPIC
European Prospective Investigation into Cancer and Nutrition
FAO
Food and Agriculture Organization of the United Nations
FDA
Food and Drug Administration (US)
FOSS
free and open source software
gDNA
genomic DNA
GWAS
genome-wide association studies
HGDP
Human Genome Diversity Project
HIPAA
Health Insurance Portability and Accountability Act (US)
HMP
Human Microbiome Project
HRT
hormone replacement therapy
HTLV
human T-lymphotrophic virus
HUGO
Human Genome Organisation
HUNT
Nord-Trøndelag Health Study (Norway)
HSCIC
Health and Social Care Information Centre (UK)
HSD
Health Sector Database (Iceland)
NCBI
National Centre for Biotechnology Information (US)
NHS
National Health Service (UK)
NICE
National Institute of Health and Clinical Excellence
NIH
National Institute of Health (US)
ME
myalgic encephalomyelitis
MOOM
Massive Open Online Medicine
PKU
phenylketonuria
P3G
Public Population Project in Genomics
RAFI
Rural Advancement Foundation International
RNA
ribonucleic acid
SNPs
single nucleotide polymorphisms
SRA
Sequence Read Archive
TMS
Tandem Mass Spectrometry
TRIPS
Trade Related Intellectual Property Rights
UK
United Kingdom
US
United States
WTO
World Trade Organization