The so-called new genetics is widely predicted to radically transform medicine and public health and deliver considerable benefits in the future. This article argues that, although it is doubtful that many of the promised benefits of genetic research will be delivered, an increasingly pervasive genetic worldview and expectations about future genetic innovations are profoundly shaping conceptions of health and illness and priorities in healthcare. Further, it suggests that debates about the normative and justice implications of new genetic technologies thus far have been constrained by bioethics discourse, which has tended to frame questions narrowly in terms of how best to ensure the protection and promotion of the rights and freedoms of the individual. Sociologists and other social scientists can help broaden debate in this field by exposing the assumptions underlying the genetic conception of health and exploring the implications of associated developments.
Agamben, G. (1998). Homo sacer: Sovereign power and bare life. Stanford, CA: Stanford University Press .
2.
Allen, G. (1996). Science misapplied: The eugenic age revisited . Technology Review, August/September, 23-31 .
3.
Austin, M. A. , Harding, S. and McElroy, C. (2003). Genebanks: A comparison of eight proposed international genetic databases . Community Genetics, 6, 37-45 .
4.
Australian Law Reform Commission (ALRC) and Australian Health Ethics Committee (AHEC) . (2005). Essentially yours: The protection of human genetic information in Australia. Government response to recommendations. ALRC & AHEC: Canberra , http://www.ag.gov.au/agd/WWW/rwpattach.nsf/VAP/(CFD7369FCAE9B8F32F341DBE097801FF)%7E3NEWzFinal+response+24+May+2005.htm/$file/3NEWzFinal+response+24+May+2005.htm (accessed 13 January 2006).
5.
Boyes, M. (1999). Whose DNA? Genetic surveillance, ownership of information and newborn screening . New Genetics and Society, 18(2/3), 145-155 .
6.
Byravan, S. (2004). Can genetics provide better treatment for breast cancer?Council for Responsible Genetics . http://www.gene-watch.org/genewatch/articles/16-2byravan.html (accessed 30 January 2006).
7.
Chadwick, R. , Levitt, M. and Shickle, D. , Eds. (1997). The right to know and the right not to know. Aldershot: Ashgate .
8.
Chapman, A. R. and Frankel, M. S. (2003). Designing our descendants: The promises and perils of genetic modification. Baltimore, MD & London: The Johns Hopkins University Press .
9.
Coghlan, A. (2006). One million people, one medical gamble. NewScientist.com news service. http://www.newscientist.com/channel/health/mg18925353.800 (accessed 23 January 2006).
10.
Conrad, P. (1999). Uses of expertise: Sources, quotes, and voice in the reporting of genetics in the news . Public Understanding of Science, 8, 285-302 .
11.
Conrad, P. (2001). Genetic optimism: Framing genes and mental illness in the news . Culture, Medicine and Psychiatry, 25, 225-247 .
12.
Corrigan, O. P. (2003). Empty ethics: The problem with informed consent . Sociology of Health and Illness, 25(7), 768-792 .
13.
Cox, S. M. and McKellin, W. (1999). ‘There’s this thing in our family’: Predictive testing and the construction of risk for Huntington Disease. In P. Conrad and J. Gabe (Eds.), Sociological perspectives on the new genetics, pp. 125-127. Oxford: Blackwell .
14.
Cyranoski, D. (2005). Japan jumps towards personalized medicine . Nature, 437(6 October), 796-796 .
15.
Department of Health . (2003). Our inheritance, our future: Realising the potential of genetics in the NHS. Norwich: HMSO .
16.
DeVries, R. and Subedi, J. (1998). Bioethics and society: Constructing the ethical enterprise. Upper Saddle River, NJ: Prentice Hall .
17.
Duster, T. (1990). Backdoor to eugenics. London & New York: Routledge .
18.
Duster, T. (2003). The hidden eugenic potential of germ-line interventions. In A. Chapman and M. S. Frankel (Eds.), Designing our descendents: The promises and perils of genetic modifications. Baltimore, MD & London: The Johns Hopkins University Press .
19.
Epstein, S. (1998). The politics of cancer - revisited. USA: East Ridge Press .
20.
Epstein, S. (1999). American Cancer Society: The world’s wealthiest ‘non-profit’ institution . International Journal of Health Services, 29(3), 565-578 .
21.
Evans, J. (2000). A sociological account of the growth of principlism . Hastings Centre Report, September-October, 31-38 .
22.
Evans, J. (2002). Playing God? Human genetic engineering and the rationalization of public bioethical debate. Chicago, IL & London: University of Chicago Press .
23.
Everett, M. (2003). The social life of genes: Privacy, property and the new genetics . Social Science and Medicine, 56(1), 53-65 .
24.
Foucault, M. (1980). The history of sexuality, volume one: An introduction. New York: Vintage Books .
25.
Frank, A. (1995). The wounded storyteller: Body, illness, and ethics. Chicago, IL: University of Chicago Press .
26.
GeneWatch. (2002). Unregulated genetic testing on the Internet and High Street . Human Genetics and Health. Parliamentary Briefing Paper 2. GeneWatch, April. http://www.genewatch.org/HumanGen/publications/MP_Briefs/MPbrief_%202.doc
27.
Glasner, P. (2004). Reconfiguring nature: Issues and debates in the new genetics. London: Ashgate .
28.
Glasner, P. and Rothman, H. (2004). Splicing life? The new genetics and society. London: Ashgate .
29.
Gottweis, H. (2005). Emerging forms of governance in genomics and post-genomics: Structures, trends, perspectives. In R. Bunton and A. Petersen (Eds.), Genetic governance: Health, risk and ethics in the biotech era, pp. 189-208. London & New York: Routledge .
30.
Green, M. J. and Butkin, J. R. (2003). ‘Genetic exceptionalism’ in medicine: Clarifying the differences between genetic and nongenetic tests . Annals of International Medicine, 138(7), 571-575 .
31.
Haimes, E. (2002). What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations . Bioethics, 16(2), 89-113 .
32.
Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility . Sociology of Health and Illness, 21(5), 597-621 .
33.
Hansen, M. J. (1999). Biotechnology and commodification within health care . Journal of Medicine and Philosophy, 24(3), 267-287 .
34.
Hedgecoe, A. (2004). The politics of personalised medicine: Pharmacogenetics in the clinic. Cambridge: Cambridge University Press .
35.
Henderson, S. and Petersen, A. , Eds. (2002). Consuming health: The commodification of health care. London: Routledge .
36.
Holtzman, N. A. and Marteau, T. M. (2000). Will genetics revolutionize medicine?New England Journal of Medicine, 343(2), 141-144 .
37.
Holtzman, N. A. , Bernhardt, B. A. , Mountcastle-Shah, E. , Rodgers, J. E. , Tambor, E. and Geller, G. (2005). The quality of media reports on discoveries relating to human genetic diseases . Community Genetics, 8(3), 133-144 .
38.
House of Lords Select Committee on Science and Technology . (2000). Science and technology - written evidence (6 November). http://www.parliament.the-stationery-office.co.uk/pa/ld199900/ldselect/ldsctech/115/115we01.htm
39.
Human Genetics Commission (HGC) . (2002). Inside information: Balancing interests in the use of personal genetic data. A report by the Human Genetics Commission. London: HGC .
40.
Jasanoff, S. (2005). Designs on nature: Science and democracy in Europe and the United States. Princeton, NJ & Oxford: Princeton University Press .
41.
Kelly, S. E. (2005). ‘New’ genetics meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky. In R. Bunton and A. Petersen (Eds.), Genetic governance: Health, risk and ethics in the biotech era, pp. 137-151. London & New York: Routledge .
42.
Khoury, M. J. (1996). From genes to public health: The applications of genetic technology in disease prevention . American Journal of Public Health, 86(12), 1717-1722 .
43.
Khoury, M. J. , Burke, W. and Thomson, E. J. , Eds. (2000). Genetics and public health in the 21st century: Using genetic information to improve health and prevent disease. New York: Oxford University Press .
44.
Kitzinger, J. , Henderson, L. , Smart, A. and Eldridge, J. (2003). Media coverage of the ethical and social implications of human genetic research. Final Report for the Wellcome Trust (February 2003). Award no: GR058105MA.
45.
Latour, B. (2004). Politics of nature: How to bring the sciences into democracy. Cambridge, MA & London: Harvard .
46.
Law, J. (2006). Big pharma: How the world’s biggest drug companies control illness. London: Constable & Robinson .
47.
McEvoy, R. (2005). The WA Genome Project: Why do we need it?Medical Forum, September. http://www.genepi.com.au/media (accessed 21 October 2005).
48.
Mackta, J. and Weiss, J. O. (1994). The role of genetic support groups . Journal of Obstetrics, Gynecologic and Neonatal Nursing, 23(6), 519-523 .
49.
McKie, R. (2004). Icelandic DNA project hit by privacy storm . The Observer,16 May. http:www.guardian.co.uk/genes/article/0,2763,1217887,00.html (accessed 24 May 2004).
50.
Malinowski, M. J. (1994). Coming into being: Law, ethics, and the practice of prenatal genetic screening . Hastings Law Journal, 45(6), 1435-1526 .
51.
Martin, P. (2001). Genetic governance: The risks, oversight and regulation of genetic databases in the UK . New Genetics and Society, 20(2), 157-183 .
52.
Mayor, S. (2003). Commission plans new controls on supply of genetic tests to the public . British Medical Journal, 326(15 February), 354-354 .
53.
M’Charek, A. (2005). The Human Genome Diversity Project: An ethnography of scientific practice. Cambridge: Cambridge University Press .
54.
Miller, F. A. , Ahern, C. , Smith, C. A. and Harvey, E. A. (2006). Understanding the new human genetics: A review of scientific editorials . Social Science and Medicine, 62(10), 2373-2385 .
55.
Miringoff, M.-L. (1991). The social costs of genetic welfare. New Brunswick, NJ: Rutgers University Press .
56.
Moynihan, R. and Cassels, A. (2005). Selling sickness: How drug companies are turning us all into patients. Crows Nest: Allen & Unwin .
57.
Nelkin, D. and Andrews, L. (1999). DNA identification and surveillance creep. In P. Conrad and J. Gabe (Eds.), Sociological perspectives on the new genetics, pp. 191-208. Oxford: Blackwell .
58.
Newell, C. (1999). Critical reflections on disability, difference and the new genetics. In G. O’Sullivan , E. Sharman and S. Short (Eds.), Goodbye normal gene: Confronting the genetic revolution, pp. 58-74. Annandale: Pluto Press Australia & Public Health Association of Australia Inc.
59.
Pálsson, G. (2004). Biomedicine: Some social implications?Keynote address, In sickness and health: Shaping health care: Power and agency, Reykjavik , 23-25 June.
60.
Pálsson, G. and Har ardóttir, K. E. (2002). For whom the cell tolls: Debates about biomedicine . Current Anthropology, 43(2), 271-301 .
61.
Pálsson, G. and Rabinow, P. (1999). Iceland: The case of a national genome project . Anthropology Today, 15(5), 14-18 .
62.
Parsons, E. and Atkinson, P. (1992). Lay constructions of genetic risk . Sociology of Health and Risk, 14(4), 437-455 .
63.
People Science and Policy Ltd. (2002). Biobank UK: A question of trust: A consultation exploring and addressing questions of public trust. Report prepared for the Medical Research Council and the Wellcome Trust (March). London: People Science & Policy Ltd.http://www.wellcome.ac.uk/en/images/biobankuktrust_5973.pdf
64.
Petersen, A. (1999). Counselling the genetically ‘at risk’: The poetics and politics of ‘non-directiveness’ . Health, Risk and Society, 1(3), 253-265 .
65.
Petersen, A. (2001). Biofantasies: Genetics and medicine in the print news media . Social Science and Medicine, 52, 1255-1268 .
66.
Petersen, A. (2002). Replicating our bodies, losing our selves: News media portrayals of human cloning in the wake of Dolly . Body & Society, 8(4), 71-90 .
67.
Petersen, A. (2005). Securing our genetic health: Engendering trust in UK Biobank . Sociology of Health & Illness, 27(2), 271-292 .
68.
Petersen, A. (2006). The best experts: The narratives of those who have a genetic condition . Social Science and Medicine, 63(1), 32-42 .
69.
Petersen, A. (in press). Is the new genetics eugenic? Interpreting the past, envisioning the future . New Formations.
70.
Petersen, A. and Bunton, R. (2002). The new genetics and the public’s health. London & New York: Routledge .
71.
Petersen, A. , Anderson, A. and Allan, S. (2005). Science fiction/science fact: Medical genetics in fictional and news stories . New Genetics and Society, 24(3), 337-353 .
72.
Petryna, A. (2002). Life exposed: Biological citizens after Chernobyl. Princeton, NJ & Oxford: Princeton University Press .
73.
Rabinow, P. (1992). Artificiality and enlightenment: From sociobiology to biosociality. In J. Crary and S. Kwinter (Eds.), Incorporations, pp. 234-252. New York: Urzone .
74.
Racine, E. , Gareau, I. , Doucet, H. , Laudy, D. , Jobin, G. and Schraedley-Desmond, P. (2006). Hyped biomedical science or uncritical reporting? Press coverage of genomics (1992-2001) in Québec . Social Science and Medicine, 62(5), 1278-1290 .
75.
Rapp, R. (1999). Testing women, testing the fetus: The social impact of amniocentesis in America. New York & London: Rouledge .
76.
Rheinberger, H.-J. (1995). Beyond nature and culture: A note on medicine in the age of molecular biology . Science in Context, 8(1), 249-263 .
77.
Richards, M. (1996). Families, kinship and genetics. In T. Marteau and M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics, pp. 249-273. Cambridge: Cambridge University Press .
78.
Rifkin, J. (1998). The biotech century: How genetic commerce will change the world. London: Phoenix .
79.
Rose, H. and Rose, S. (2000). Alas, poor Darwin: Arguments against evolutionary psychology. London: Jonathon Cape .
80.
Rose, N. (2001). The politics of life itself . Theory, Culture & Society, 18(6), 1-30 .
81.
Rose, N. and Novas, C. (2005). Biological citizenship. In A. Ong and S. J. Collier (Eds.), Global assemblages: Technology, politics, and ethics as anthropological problems, pp. 439-463. Malden, MA: Blackwell .
82.
Royal Society . (2005). Personalised medicines: Hopes and realities. London: The Royal Society .
83.
Sample, I. (2006). Gene tests from shops and Internet ‘waste of money’ . Guardian, 30 January: 5-5 .
84.
Shakespeare, T. (1998). Choices and rights: Eugenics, genetics and disability equality . Disability and Society, 13(5), 665-681 .
85.
Suter, S. M. (2001). The allure and peril of genetic exceptionalism: Do we need special genetics legislation?Washington University Law Quarterly, 79(3). http://papers.ssrn.com/sol3/papers.cfm?abstract_id=276875
86.
TRAMES: Journal of the Humanities and Social Sciences. (2004). Special Issue: Human genetic databases: Ethical, legal and social issues , 8(1/2), 1-253 .
87.
Tutton, R. and Corrigan, O. (2004). Genetic databases: Socio-ethical issues in the collection and use of DNA. London & New York: Routledge .
88.
Ward, L. (2005). Whose right to choose? The new genetics, prenatal testing and people with learning disabilities. In R. Bunton and A. Petersen (Eds.), Genetic governance: Health, risk and ethics in the biotech era, pp. 121-135. London & New York: Routledge .
89.
Wellcome Trust and MRC . (2000). Public perceptions of the collection of human biological samples. Summary report. http://www.wellcome.ac.uk/en/genome/geneticsandsociety/hg16f002.html
90.
Wellcome Trust , MRC and Department of Health . (2003). UK biobank ethics and governance framework, version 1.0, 24 September. http:www.biobank.ac.uk/documents/egf-comment-version.doc
91.
Whitt, L. A. (1998). Biocolonialism and the commodification of knowledge . Science as Culture, 7(1), 33-67 .
92.
Willis, E. (2005). Public health and the ‘new genetics’. In R. Bunton and A. Petersen (Eds.), Genetic governance: Health, risk and ethics in the biotech era, pp. 155-169. London & New York: Routledge .
93.
World Health Organization (WHO) . (2002). Genomics and world health. Report of the Advisory Committee on Health Research. WHO: Geneva . http://www3.who.int/whosis/genomics/genomics_report.cfm
94.
Zimmern, R. (1999). Genetics. In S. Griffiths and D. J. Hunter (Eds.), Perspectives in public health. Oxon: Radcliff Medical Press .
