Living With The Genome

GWEN ADSHEAD Traumatic Stress Clinic, London, UK JOSEPH S. ALPER University of Massachusetts, Boston, USA EINAR ÁRNASON University of Iceland, Reykjavik, Iceland PAUL ATKINSON Cardiff University, UK HENRI ATLAN Hadassah University Hospital, Jerusalem, Israel and Ecole des Hautes Etudes en Sciences Sociales, Paris, France ARA BARSAM University of Oxford, UK PATRICK BATESON University of Cambridge, UK JON BECKWITH University of Massachusetts, Boston, USA PHILIP L. BEREANO Department of Technical Communication, University of Washington, USA ADITYA BHARADWAJ Cardiff University, UK BARBARA B. BIESECKER National Human Genome Research Institute, Maryland, USA JENNIFER BOSTOCK Kings College, London, UK HANNAH BRADBY University of Warwick, Coventry, UK TIMOTHY CAULFIELD University of Alberta, Canada RUTH CHADWICK Lancaster University, UK IRUN COHEN The Weizmann Institute of Science, Israel DENA DAVIS Cleveland State University, Ohio, USA DONNA DICKENSON University of Birmingham, UK GABRIEL DOVER University of Leicester, UK TROY DUSTER New York University, USA CAROL EMSLIE MRC Social & Public Health Sciences Unit, University of Glasgow, UK VERONICA ENGLISH British Medical Association, London, UK COLIN FARELLY University of Manchester, UK KATIE FEATHERSTONE Cardiff University, UK MARY FORD Cardiff Law School, Cardiff University, UK MICHAEL A. FORTUN Department of Science & Technology Studies, Rensselaer Polytechnic Institute, USA SUN-WEI GUO Medical College ofWisconsin, USA JOHN HARRIS University of Manchester, UK SHEILA HOLLINS St George's Hospital Medical School, London, UK KATE HUNT MRC Social & Public Health Sciences Unit, University of Glasgow, UK REGINE KOLLECK University of Hamburg, Germany ANDREW LINZEY University of Oxford, UK JOHNATHON MARKS University of North Carolina at Charlotte, USA PAUL A. MARTIN University of Nottingham, UK JANE MCCARTHY St George's Hospital Medical School, London, UK ROBYN MCDERMOTT Queensland Health, Australia TONY MCGLEENAN School of Law, University of Ulster, UK JOHN J. MITCHELL McGill University, Canada BERNADETTE MODELL University College London, UK DEREK MORGAN Cardiff Law School, Cardiff University, UK DOROTHY NELKIN Department of Sociology & School of Law, New York University, USA ALAN PETERSON University of Plymouth, UK LINDSAY PRIOR Cardiff University, UK ANNIE PROCTER Institute of Medical Genetics, Cardiff, UK PHILIP R. REILLY Interleukin Genetics Inc., USA MARTIN RICHARDS University of Cambridge, UK JEREMY RIFKIN The Foundation on Economic Trends, Washington, USA STEVEN P. R. ROSE The Open University, Milton Keynes, UK MICHAEL RUSE Florida State University, Tallahassee, USA CHARLES R. SCRIVER McGill University, Canada TOM SHAKESPEARE University of Newcastle Upon Tyne, UK VALERIE SINASON St George's Hospital Medical School, London, UK ANN SOMMERVILLE British Medical Association, London, UK PAUL WEINDLING Oxford Brookes University, Oxford, UK FRANK WELLS Pha

Acknowledgements List of Contributors Glossary Introduction; A.Clarke PART 1: THE HUMAN GENOME PROJECT: GENETIC RESEARCH & COMMERCIALISATION Introduction; A.Clarke & F.Ticehurst Celera Genomics: The Race for the Human Genome Sequence; M.A.Fortun Human Genome Project as a Social Enterprise; P.L.Bereano Commercialization of Human Genetic Research; T.Caulfield Patenting of Genes: A Personal View; J.Rifkin Human Genome Diversity Project (HGDP): Impact on Indigenous Communities; J.Marks deCODE and Iceland: A Critique; E.Árnason & F.Wells Informed Consent in Human Genetic Research; P.R.Reilly Gene Therapy: Expectations and Results; P.A.Martin PART 2: GENETIC DISEASE: IMPLICATIONS FOR INDIVIDUALS, FAMILIES AND POPULATIONS Introduction; A.Clarke & F.Ticehurst Genetic Counseling: Psychological Issues; B.B.Biesecker Genetic Testing of Children; A.Procter Genetic Risk; L.Prior Genetic Susceptibility; C.Emslie & K.Hunt Thrifty Gene Hypothesis: Challenges; R.McDermott Carrier Screening for Inherited Hemoglobin Disorders in Cyprus and the United Kingdom; B.Modell Carrier Screening of Adolescents in Montreal; C.R.Scriver & J.J.Mitchell PART 3: DISABILITY, GENETICS & EUGENICS Introduction; A.Clarke & F.Ticehurst Nazi Movement and Eugenics; P.Weindling Eugenics: Contemporary Echoes; T.Duster China: The Maternal and Infant Health Care Law; S.Guo Disability, Human Rights and Contemporary Genetics; T.Shakespeare Mentally Handicapped in Britain: Sexuality and Procreation; J.McCarthy, V.Sinason & S.Hollins PART 4: GENETICS & SOCIETY: INFORMATION, INTERPRETATION AND REPRESENTATION Introduction; A.Clarke & F.Ticehurst Gene as a Cultural Icon; D.Nelkin Heredity: Lay Understanding; M.Richards Inheritance and Society; P.Atkinson, A.Bharadwaj & K.Featherstone Privacy and Genetic Information; V.English & A.Sommerville Insurance and Genetic Information; T.McGleenan 'Race', IQ and Genes; J.Beckwith & J.S.Alper Criminal Responsibility and Genetics; J.Bostock & G.Adshead PART 5: GENETICEXPLANATIONS: UNDERSTANDING ORIGINS AND OUTCOMES Introduction; A.Clarke & F.Ticehurst Genetics as Explanation: Limits to the Human Genome Project; I.Cohen & H.Atlan Darwin and the Idea of Natural Selection; G.Dover Sociobiology, Evolutionary Psychology, and Genetics; P.Bateson Creationism; M.Ruse Genetics, Reductionism and Autopoiesis; S.P.R.Rose Personal Identity: Genetics and Determinism; R.Chadwick Racism, Ethnicity, Biology and Society; H.Bradby PART 6: REPRODUCTION, CLONING AND THE FUTURE Introduction; A.Clarke & F.Ticehurst In Vitro Fertilization: Regulation; D.Morgan & M.Ford Reproductive Choice; J.Harris Feminist Perspectives on Human Genetics and Reproductive Technologies; D.Dickenson Sex Selection; D.Davis Dolly and Polly; A.Petersen Cloning of Animals in Genetic Research: Ethical and Religious Issues; A.Linzey & A.Barsam Distributive Justice and Genetics; C.Farelly Reprogenetics: Visions of the Future; R.Kollek Index