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6 - Empowered by choice?

Published online by Cambridge University Press:  05 September 2014

By
Mairi Levitt
Edited by
Ruth Chadwick ,
Mairi Levitt  and
Darren Shickle
Mairi Levitt
Affiliation:
Lancaster University
Mairi Levitt
Affiliation:
Lancaster University
Darren Shickle
Affiliation:
University of Leeds
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Summary

At the heart of the right to know and the right not to know debate is the right to choose, which is predicated on the right to information, and other relevant resources, to enable a choice to be made. In many areas of everyday life choices have proliferated; in affluent countries there are more TV channels and types of eggs, ways of serving coffee or listening to music than ever before. Many of these choices may be trivial, but patients and parents are also increasingly bombarded with information and advice on more serious matters concerning health and child rearing. Patients and parents can obtain information to help make a choice of where to go for hospital treatment or which school they would like their child to attend. Hospital and school league tables and websites provide information on outcomes (e.g., survival rates after different types of surgery or examination pass rates), staffing levels and other factors that might influence decisions (hospital car parking or school uniform policy). Even in societies with universal health and education provision, it is acknowledged by providers that the more ‘informed and articulate’ have more choices, including the choice to go elsewhere into the private sector.

This chapter first discusses the choice agenda in health and the effects of choice on the chooser. Next, the possibility and desirability of changing the focus from individual autonomy and ever-increasing choice is considered and discussed through the example of the genetic screening of embryos and children.

Type
Chapter
Information
The Right to Know and the Right Not to Know
Genetic Privacy and Responsibility
 , pp. 85 - 99
Publisher: Cambridge University Press
Print publication year: 2014

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References

23andMe. Available at: (accessed 22 November 2013).
Ahlquist, L. 1997. Empowerment in Action. Practising empowerment. Edinburgh: Age Concern Scotland.Google Scholar
Ahmed, S., Bryant, L. D., Zahra, Tizro Z. and Shickle, D. 2012. ‘Is advice incompatible with autonomous informed choice? Women’s perceptions of advice in the context of antenatal screening: a qualitative study’, Health Expectations doi: Google Scholar
Arterian, H. R. 2007. ‘Essays by American Law Deans. Legal education and the tyrannical “paradox of choice: why more is less”’, Toronto Law Review 38: 495–505.Google Scholar
Berger, P. and Luckmann, T. 1967. The Social Construction of Reality. A treatise in the sociology of knowledge. Harmondsworth: Penguin.Google Scholar
Botti, S., Orfali, K. and Iyengar, S. S. 2009. ‘Tragic choices: Autonomy and emotional response to medical decisions’, Journal of Consumer Research 36(3): 337–52.CrossRefGoogle Scholar
Calloway, E. 2009. ‘Murderer with “aggression genes” gets sentence cut’, New Scientist 22(27) 3 November 2009.Google Scholar
Caspi, A., McCLay, J., Moffitt, T. E., Mill, J. M., Judy, M., Craig, I. W., Taylor, A. and Poulton, R. 2002. ‘Role of genotype in the cycle of violence in maltreated children’, Science 297: 5582.CrossRefGoogle ScholarPubMed
Chua, R. Y. J. and Iyengar, S. 2006. ‘Empowerment through choice? A critical analysis of the effects of choice in organizations’, Research in Organizational Behavior 27: 41–79.CrossRefGoogle Scholar
Clarke, A. 1991. ‘Is non-directive genetic counselling possible?’, Lancet 338(8779): 998–1001.CrossRefGoogle Scholar
Department of Health 2000. The NHS Plan: A plan for investment, a plan for reform. Available at: (accessed 22 November 2013).
Department of Health 2010. Equity and Excellence: Liberating the NHS. Cm 7881. London: The Stationery Office. Available at: (accessed 22 November 2013).
Department of Health 2010. Consultation. Liberating the NHS: Greater choice and control. Available at: (accessed 22 November 2013).
Dixon, M. 2005. Brave New Choices. Behavioural genetics and public policy. London: IPPR.Google Scholar
Evans, H. M. 2004. ‘Should patients be allowed to veto their participation in clinical research?’Journal of Medical Ethics 30: 195–203.CrossRefGoogle Scholar
Farahany, N. A. and Coleman, J. E. Jr. 2006. ‘Genetics and responsibility: To know the criminal from the crime’, Law and Contemporary Problems 69:115–62.Google Scholar
Fukuyama, F. 2002. Our Posthuman Future. Consequences of the biotechnological revolution. London: Profile Books.Google Scholar
GeneWatch UK 2006. Submission to the HFEA consultation ‘Choices and Boundaries’ January 2006. Available at: (accessed 22 November 2013).
Golhurst, S. E., Hull, S. C and Wilfond, B. S. 2002. ‘Limitations of direct-to-consumer advertising for clinical genetic testing’, JAMA 288(14): 1762–7.Google Scholar
Harris, J. 2003. ‘Organ procurement: Dead interests, living needs’, Journal of Medical Ethics 29: 130–4.CrossRefGoogle ScholarPubMed
Hayry, M. 2003. ‘European values in bioethics: Why, what, and how to be used?’Theoretical Medicine 24: 199–214.CrossRefGoogle Scholar
Hesketh, T. 2011. ‘The consequences of son preference and sex-selective abortion in China and other Asian countries’, Canadian Medical Association Journal (CMAJ) 183(12): 1374–7.CrossRefGoogle ScholarPubMed
Hirsch, F. 1977. Social Limits to Growth. London: Routledge & Kegan Paul.Google Scholar
The Human Fertilisation and Embryology Authority 2006. Choices and Boundaries. London: HFEA. Available at: (accessed 22 November 2013).Google Scholar
Iyengar, S. 2010. The Art of Choosing. New York: Twelve.Google Scholar
Knoppers, B. and Chadwick, R. 2005. ‘Human genetic research: Emerging trends in ethics’, Nature Reviews Genetics 6: 75–9.CrossRefGoogle ScholarPubMed
Levitt, M. 2013. ‘Genes, environment and responsibility for violent behaviour: “Whatever genes one has it is preferable that you are prevented from going around stabbing people”’, New Genetics and Society 32(1): 4–17.CrossRefGoogle Scholar
Magnus, D., Cho, M. K. and Cooke-Deegan, R. 2009. ‘Direct to consumers genetic tests: Beyond medical regulation?’Genome Medicine 1: 17.CrossRefGoogle Scholar
Matravers, M. 2007. Responsibility and Justice. Cambridge: Policy Press.Google Scholar
Mitchie, S., Bron, F., Bobrow, M. and Marteau, T. M. 1997. ‘Non-directiveness in genetic counselling: An empirical study’, Am J Hum Genet 60(1): 40–7.Google Scholar
My Gene Profile Testimonials. Available at: (accessed 22 November 2013).
National Institute for Clinical Excellence 2004. Assessment and Treatment for People with Fertility Problems. London: NICE.Google Scholar
Navarro-Michel, M. 2011. ‘Transplanting the Spanish model of organ donation’, in Farrell, A.-M., Price, D. and Quigley, M. (eds.) Organ Shortage. Ethics law and pragmatism. Cambridge University Press, pp. 151–70.CrossRefGoogle Scholar
Park, A., Bryson, C., Clery, E., Curtice, J. and Phillips, M. (eds.) 2013. British Social Attitudes: the 30th Report. London: NatCen Social Research. Available at: (accessed 16 April 2014).
Paton, K. 2007. ‘Conceptualising “choice”; A review of the theoretical literature’. Working paper 5, Non-participation in HE Project Series. School of Education, University of Southampton.
Peddie, V. L., Teijlengen, E. van and Bhattacharya, S. 2005. ‘A qualitative study of women’s decision-making at the end of IVF treatment’, Human Reproduction 20: 1944–51.CrossRefGoogle Scholar
Prainsack, B. and Buyx, A. 2012. ‘Solidarity in contemporary bioethics – Towards a new approach’, Bioethics 26(7): 343–50.CrossRefGoogle ScholarPubMed
Rumbold, B., Alakeson, V. and Smith, P. C. 2012. Rationing Health Care. London: Nuffield Trust. Available at: (accessed 22 November 2013).Google Scholar
Savulescu, J. 2001. ‘Procreative beneficence’, Bioethics 15(5/6): 413–26.CrossRefGoogle ScholarPubMed
Schwartz, B. 2004. The Paradox of Choice. Why more is less. New York: Harper Collins.Google Scholar
Stephens, N. M., Townsend, S. and Markus, H. R. 2007. ‘Choice as an act of meaning: The case of social class’, Journal of Personality and Social Psychology 93(5): 814–30.CrossRefGoogle ScholarPubMed
Wachbroit, R. and Wasserman, D. 1995. ‘Patient autonomy and value-neutrality in non-directive genetic counselling’, Stanford Law Review 6(2):103–11; reprinted in Kuhse, H. and Singer, P. (eds.) 2006 Bioethics An anthology. 2nd edn, Oxford: Blackwell, pp. 237–45.Google Scholar

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