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9 - The right to know and the right not to know in the era of neoliberal biopolitics and bioeconomy

Published online by Cambridge University Press:  05 September 2014

Henk Ten Have
Affiliation:
Duquesne University
Mairi Levitt
Affiliation:
Lancaster University
Darren Shickle
Affiliation:
University of Leeds
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Summary

Introduction

With advancing knowledge and information the right to know and the right not to know are becoming increasingly problematic. Whether or not we have these rights is debatable as it seems we are more and more absorbed in processes that make it unavoidable to know. It is even argued that there is a duty to know, so that whether we like it or not, we are dictated by knowledge to decide how we wish to apply it. I have earlier attributed the association between availability and application to the phenomenon of geneticization (Ten Have 1997). This is the socio-cultural process of interpreting and explaining human beings using the terminology and concepts of genetics, so that not only health and disease but all human behavior and social interactions are viewed through the prism of biomolecular technology (Ten Have 2012b). Geneticization has since then only amplified its outreach and impact. Many human behaviors have been associated and ‘explained’ by the existence of a specific gene. The well-known discussion on the ‘warrior gene’ attributed to the Maori in New Zealand is no exception. The occurrence of this gene was used in a murder case in 2010 to argue for diminished responsibility, and it influenced the jury’s decision (‘not murder’) (Hagerty 2010). The discovery of the gambling gene (1996) and adultery gene (2010) have opened up interesting perspectives for the notion of responsibility. There is even a search for a genetic origin of human rights (Keane 2010). Medicine in particular is affected by geneticization. Genes are increasingly considered as the origin of health and disease. There is only a limited role for psychological, social and environmental factors since the ultimate causal factors are genetic. The concept of health is also changing (Torres 2006). With the possibility of detecting mutations in the genome that might in the future produce serious diseases, one is only considered healthy if the genome is healthy. As soon as a mutation is discovered one is no longer healthy but ‘unhealthy.’ The implication is that as genetic technologies are multiplying the number of healthy people will decline, and ultimately, most people will be unhealthy. Health will become exceptional and rare with the progress of genetics. In fact, with this logic, the genetic framework will become inescapable (Stempsey 2006).

Type
Chapter
Information
The Right to Know and the Right Not to Know
Genetic Privacy and Responsibility
, pp. 133 - 150
Publisher: Cambridge University Press
Print publication year: 2014

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References

Beall, Jeffrey 2012. ‘Predatory publishers are corrupting open access’, Nature 489: 179.CrossRefGoogle Scholar
Beall, Jeffrey, Beall’s list of predatory publishers 2013. Available at: (accessed September 13, 2013).
Birch, Kean 2008. ‘Neoliberalising bioethics: Bias, enhancement and economistic ethics’, Genomics, Society and Policy 4: 1–10.CrossRefGoogle Scholar
Blasi, Alexandra E. 2012. ‘An ethical dilemma. Patents & profits v. access & affordability’, Journal of Legal Medicine 33: 115–28.CrossRefGoogle ScholarPubMed
Braedley, Susan and Luxton, Meg (eds.) 2010. Neoliberalism and Everyday Life. Montreal and Kingston: McGill-Queen’s University Press.
Brenner, Steven E. 2013. ‘Be prepared for the big genome leak’, Nature 498: 139.CrossRefGoogle ScholarPubMed
Callaway, Ewen 2013. ‘Deal done over HeLa cell line’, Nature 500: 132–3.CrossRefGoogle ScholarPubMed
Campbell, Eric G., Clarridge, Brian R., Gokhale, Manjusha, Birenbaum, Lauren, Hilgartner, Stephen, Holtzman, Neil A. and Blumenthal, David 2002. ‘Data withholding in academic genetics. Evidence from a national survey’, JAMA 287: 473–80.CrossRefGoogle ScholarPubMed
Clarke, A. E., Shim, J., Shostak, S. and Nelson, A. 2009. ‘Biomedicalisation of health and identity’, in Atkinson, P., Glasner, P. and Lock, M. (eds.) Handbook of Genetics and Society; Mapping the new genomic era. London/New York: Routledge, pp. 21–40.Google Scholar
Cooper, Melinda 2008. Life as Surplus. Biotechnology and capitalism in the neoliberal era. Seattle, WA and London: University of Washington Press.Google Scholar
Correa, Carlos Maria 2004. ‘Ownership of knowledge – The role of patents in pharmaceutical R&D’, Bulletin of the World Health Organization 82: 784–90.Google ScholarPubMed
Cox, Robert W. 2002. The Political Economy of a Plural World: Critical reflections on power, morals and civilization. London: Routledge.CrossRefGoogle Scholar
Davies, Kevin and White, Michael 1995. Breakthrough. The quest to isolate the gene for hereditary breast cancer. London: Macmillan.Google Scholar
Ellsberg, Daniel 2013. ‘Edward Snowden: Saving us from the United Stasi of America’, The Guardian, June 10, 2013. Available at: (accessed September 11, 2013).
Grady, Christine 2013. ‘Reflections on two decades of bioethics: Where we have been and where we are going’, American Journal of Bioethics 13: 8–10.CrossRefGoogle ScholarPubMed
Gutmann, Amy and Wagner, James W. 2013. ‘Found your DNA on the web: Reconciling privacy and progress’, Hastings Center Report 43: 15–18.CrossRefGoogle ScholarPubMed
Gymrek, M., McGuire, A. L., Gloan, D., Halperin, E. and Erlich, Y. 2013. ‘Identifying personal genomes by surname inference’, Science 339: 321–4.CrossRefGoogle ScholarPubMed
Hagerty, B. B. 2010. ‘Can your genes make you murder?’ Available at: (accessed September 11, 2013).
Harvey, David 2005. A Brief History of Neoliberalism. Oxford/New York: Oxford University Press.Google Scholar
Hayden, Erika Check 2013a. ‘The genome hacker’, Nature 497: 173–4.Google ScholarPubMed
Hayden, Erika Check 2013b. ‘Geneticists push for global data-sharing’, Nature 498: 16.Google ScholarPubMed
Herring, Jonathan and Foster, Charles 2012. ‘“Please don’t tell me.” The right not to know’, Cambridge Quarterly of Healthcare Ethics 21: 20–9.CrossRefGoogle ScholarPubMed
Joh, Elizabeth E. 2011. ‘DNA theft: Your genetic information at risk’, Nature Review Genetics 12: doi:.CrossRefGoogle ScholarPubMed
Joyner, Christopher C. 1986. ‘Legal implications of the concept of the common heritage of mankind’, International and Comparative Law Quarterly 35: 190–9.CrossRefGoogle Scholar
Kaye, Jane 2012. ‘The tension between data sharing and the protection of privacy in genomics research’, Annual Review of Genomics and Human Genetics 12: 415–31.CrossRefGoogle Scholar
Keane, D. 2010. ‘Survival of the fairest? Evolution and the geneticization of rights’, Oxford Journal of Legal Studies 30: 467–94.CrossRefGoogle Scholar
Kesselheim, Aaron S., Cook-Deegan, Robert M., Winickoff, David E. and Mello, Michelle M. 2013. ‘Gene patenting – The Supreme Court finally speaks’, New England Journal of Medicine: DOI:.CrossRefGoogle ScholarPubMed
Kirby, Peadar 2006. Vulnerability and Violence. The impact of globalisation. London/Ann Arbor, MI: Pluto Press.Google Scholar
Knoppers, Bartha Maria, Zawati, Ma’n H. and Kirby, Emily S. 2012. ‘Sampling populations of humans across the world: ELSI issues’, Annual Review of Genomics and Human Genetics 13: 395–413.CrossRefGoogle ScholarPubMed
Krumholz, Harlan M., Ross, Joseph S., Gross, Cary P., Emanuel, Ezekiel J., Hodshon, Beth, Ritchie, Jessica D., Low, Jeffrey B. and Lehman, Richard 2013. ‘A historic moment for open science: The Yale University Open Access Project and Medtronic’, Annals of Internal Medicine 158(12): 910–12.CrossRefGoogle Scholar
Lemke, Thomas 2011. Biopolitics. An advanced introduction. New York and London: New York University Press.Google Scholar
McGuire, Amy L., Oliver, Jill M., Slashinski, Melody J., Graves, Jennifer L., Wang, Tao, Kelly, P. Adam, Fisher, William, Lau, Ching C., Goss, John, Okcu, Mehmet, Treadwell-Deering, Diane, Goldman, Alica M., Noebels, Jeffrey L. and Hilsenbeck, Susan G. 2011. ‘To share or not to share: A randomized trial of consent for data sharing in genome research’, Genetic Medicine 13(11): 948–55.CrossRefGoogle ScholarPubMed
Memmi, Dominique 2003. ‘Governing through speech: The new state administration of bodies’, Social Research 70(2): 645–58.Google Scholar
Nixon, Ron 2013. ‘US postal service logging all mail for law enforcement’, New York Times July 3, 2013. Available at: (accessed September 9, 2013).
Nowotny, Helga and Testa, Giuseppe 2010. Naked Genes. Reinventing the human in the molecular age. Cambridge, MA London, England: The MIT Press.Google Scholar
Rodriguez, Laura L., Brooks, Lisa D., Greenberg, Judith H. and Green, Eric D. 2013. ‘The complexities of genomic identifiability’, Science 339: 275–6.CrossRefGoogle ScholarPubMed
Rouvroy, A. 2008. Human Genes and Neoliberal Governance: A Foucauldian critique. New York: Routledge-Cavendish.Google Scholar
Savard, Jacqueline 2013. ‘Personalised medicine: A critique on the future of health care’, Bioethical Inquiry 10: 197–203.CrossRefGoogle ScholarPubMed
Stempsey, William F. 2006. ‘The geneticization of diagnostics’, Medicine, Health Care and Philosophy 9: 193–200.CrossRefGoogle Scholar
Stiglitz, Joseph E. 2013. ‘How intellectual property reinforces inequality’, New York Times July 14, 2013. Available at: (accessed September 10, 2013).
Sunder Rajan, Kaushik 2006. Biocapital. The constitution of postgenomic life. Durham and London: Duke University Press.CrossRefGoogle Scholar
Ten Have, Henk 1997. ‘Living with the future: Genetic information and human existence’, in Chadwick, Ruth, Levitt, Mairi and Shickle, Darren (eds.) The Right to Know and the Right Not to Know. Avebury: Aldershot, pp. 87–95.Google Scholar
Ten Have, Henk 2007. ‘The need and desirability of an (Hippocratic) Oath or Pledge for scientists’, in Engelbrecht, J. and Schroots, J. J. F. (eds.) New Perspectives in Academia. ALLEA Biennial Yearbook 2006. Amsterdam: KNAW, pp. 19–30.Google Scholar
Ten Have, Henk 2011. ‘Global bioethics and communitarianism’, Theoretical Medicine and Bioethics 32: 315–26.CrossRefGoogle ScholarPubMed
Ten Have, Henk 2012a. ‘Potter’s notion of bioethics’, Kennedy Institute of Bioethics 22(1): 59–82.CrossRefGoogle ScholarPubMed
Ten Have, Henk 2012b. ‘Geneticization: Concept’, in Encyclopedia of Life Sciences (eLS 2012). Chichester:John Wiley & Sons, Ltd. Available at: (accessed April 8, 2014).Google Scholar
Ten Have, Henk 2013. ‘Global bioethics: Transnational experiences and impacts on Islamic bioethics’, Zygon: Journal of Religion and Science 48(3): 600–17.CrossRefGoogle Scholar
Ten Have, Henk and Bert, Gordijn 2014. ‘Global bioethics’, in ten Have, Henk and Gordijn, Bert (eds.) Compendium and Atlas of Global Bioethics. Berlin: Springer Publishers, pp. 3–18.CrossRef
Ten Have, Henk A. M. J. and Jean, Michèle S. (eds.) 2009. The UNESCO Universal Declaration on Bioethics and Human Rights. Background, principles and application. Paris:UNESCO Publishing.
Torres, J. M. 2006Genetic tools, Kuhnian theoretical shift and the geneticization process’, Medicine, Health Care and Philosophy 9: 3–12.CrossRefGoogle Scholar
UNESCO 1997. Universal Declaration on the Human Genome and Human Rights. Paris: UNESCO. Available at: (accessed September 10, 2013).Google Scholar
Walters, Leroy 2012. ‘Genetics and bioethics: How our thinking has changed since 1969’, Theoretical Medicine and Bioethics 33: 83–95.CrossRefGoogle ScholarPubMed
Weiner, K. and Martin, P. 2008. ‘A genetic future for coronary heart disease?Sociology of Health & Illness 30: 380–95.CrossRefGoogle ScholarPubMed
Willinsky, John 2006. The Access Principle: The case for open access to research and scholarship. Cambridge, MA: Massachusetts Institute of Technology. Available at: (accessed September 13, 2013).Google Scholar
Zimmer, Carl 2013. ‘A family consents to a medical gift, 62 years later’, New York Times, August 7, 2013. Available at: (accessed September 11, 2013).

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