Hostname: page-component-84b7d79bbc-dwq4g Total loading time: 0 Render date: 2024-07-30T20:45:30.406Z Has data issue: false hasContentIssue false
  • English
  • Français

Storytelling to Enrich the Democratic Debate: The Dutch Discussion on Embryo Selection for Hereditary Breast Cancer

Published online by Cambridge University Press:  01 September 2009

Marli Huijer
Marli Huijer
Affiliation:
Erasmus University Rotterdam, Faculty of Philosophy, PO Box 1738, 3000 DR Rotterdam, The Netherlands E-mail: huijer@fwb.eur.nl
Get access

Abstract

In the Netherlands, the opposition between advocates of embryo selection (preimplantation genetic diagnosis, PGD) and opponents seeking to ban PGD altogether escalated in May and June 2008, shortly after the State Secretary of Health proposed to rescind the ban on PGD for hereditary breast cancer. The clash between the Social Democratic Labour Party and the Reformed Christian Party, both represented in the Dutch Parliament, was ultimately settled in a quite friendly atmosphere. The active engagement in the debate of women and some men with a family history of hereditary breast cancer, who wrote or told their personal stories to the media, may have helped solve the conflict. In this article, I identify the stories of suffering and the arguments for or against PGD that BRCA mutation carriers made public in response to the controversy. Subsequently, the empirical findings are interpreted in light of political theories on the role of storytelling in political discourse. Deborah Stone’s recognition that storytelling is part and parcel of all political discourse and Iris Marion Young’s analysis of what stories do are used to evaluate the transformative effect that the real-life stories had in the Dutch public debate on PGD for hereditary breast cancer.

Keywords

ControversyDemocratic DebatePGDPoliticsStories
Type
Articles
Information
BioSocieties , Volume 4 , Issue 2-3 , September 2009 , pp. 223 - 238
Copyright
Copyright © London School of Economics and Political Science 2009

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Arendt, H. (1998). The human condition. Chicago: U Chicago Press.CrossRefGoogle Scholar
Benhabib, S. (1996). The democratic moment and the problem of difference. In Benhabib, S. (Ed.), Democracy and difference: Contesting the boundaries of the political, 3–18. Princeton, NJ: Princeton UP.CrossRefGoogle Scholar
Benhabib, S. (1996). Toward a deliberative model of democratic legitimacy. In Benhabib, S. (Ed.), Democracy and difference: Contesting the boundaries of the political, 67–94. Princeton: Princeton UP.CrossRefGoogle Scholar
Bles, W. van der (2008). Ik heb moeite met dat maakbaarheidsidee. Interview with Am Schüngel. Trouw, 24 June 2008.Google Scholar
Brand, T. van den (2008). Embryoselectie? Het kan, dus grijp je kans. Interview with Marijke. Brabants Dagblad, 6 June.Google Scholar
Bussemaker, J. (2008a). Embryo selectie. Netwerk televisie, 26 May.Google Scholar
Bussemaker, J. (2008b). Brief aan de Voorzitter van de Tweede Kamer der Staten-Generaal. Standpunt Preïmplantatie genetische diagnostiek (PG/E-2848071), May, The Hague.Google Scholar
Bussemaker, J. (2008c). Kabinetsstandpunt prëimplantatie genetische diagnostiek. Brief aan de Voorzitter van de Tweede Kamer der Staten-Generaal, 27 June, The Hague.Google Scholar
ChristenUnie (2008) Standpunten: FAQ ChristenUnie en embryoselectie, 27 June. URL (accessed July 2009): http://www.christenunie.nl/nl/faq_embryoselectieGoogle Scholar
Daalen, A. van (2008). Erfelijke borstkanker. Trouw, 5 June.Google Scholar
Dahl, R.A. (2000). On democracy. New Haven, CT: Yale UP.Google Scholar
EénVandaag (2008) Aan de keukentafel. Staatssecretaris Jet Bussemaker, 28 July. URL (accessed July 2009): http://www.eenvandaag.nl/binnenland/33718/gesprek_aan_de_keukentafel_jet_bussemakerGoogle Scholar
Ephimenco, S. (2008). Pijl en boog. Trouw, 31 May.Google Scholar
Etty, E. (2008). Krijg dan maar borstkanker. NRC Handelsblad, 3 June.Google Scholar
Fraser, N. (1992) Rethinking the public sphere: A contribution to the critique of actually existing democracy. In Calhoun, C. (Ed.), Habermas and the public sphere, 109–142. Cambridge, MA: MIT Press.Google Scholar
Groenewold, E. (2008). Dit wil je niemand aandoen. Metro, 10 June.Google Scholar
Haan, A. de (2008). Sinds een week is bekend: ik ben drager van BRCA2. Trouw, 7 June. Also published as: Ik ben drager van BRCA2 en ik was blij met de brief van Bussemaker. NRC Handelsblad, 7 June. A shorter version was published as: Embryoselectie. de Volkskrant, 9 June.Google Scholar
Habermas, J. (1996a). Three normative models of democracy. In Benhabib, S. (Ed.), Democracy and difference: Contesting the boundaries of the political, 21–30. Princeton, NJ: Princeton UP.Google Scholar
Habermas, J. (1996b). Between facts and norms: Contributions to a discourse theory of law and democracy, trans. W. Rehg. Cambridge, MA: MIT Press.CrossRefGoogle Scholar
Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility. Sociology of Health & Illness, 21, 597–621.CrossRefGoogle Scholar
Harvey, M. (2009). Drama, talk and emotion: Omitted aspects of public participation. Science, Technology & Human Values, 34, 139–161.CrossRefGoogle Scholar
Henderson, L., & Kitzinger, J. (1999). The human drama of genetics: ‘Hard’ and ‘soft’ media representations of inherited breast cancer. In Conrad, P., & Gabe, J. (Eds), Sociological perspectives on the new genetics, 59–76. Oxford: Blackwell.Google Scholar
Huijer, M. (2003). Reconsidering democracy: History of the Human Genome Project. Science Communication, 24, 479–502.CrossRefGoogle Scholar
Klok, P. (2008). Het dna-dilemma: embryoselectie. de Volkskrant, 14 June.Google Scholar
Kruyver, G. (2008). Diepe bewonderings, Margriet. de Volkskrant, 14 June.Google Scholar
Kruyver, M. (2008). Leven met borstkanker. Brief van de dag. de Volkskrant, 10 June.Google Scholar
Leach, M., & Scoones, I. (2005) Science and citizenship in a global context. In Leach, M., Scoones, I., & Wynne, B. (Eds), Science and citizenship: Globalization and the challenge of engagement, 15–38. London: Zed Books.CrossRefGoogle Scholar
Ligtvoet, F. (2008). Ik kan die staatssecretaris wel zoenen. Interview with Caroline Haasbroek. Parool, 28 May. (The same day published in circa 15 regional newspapers).Google Scholar
Lister, R. (2003). Citizenship: Feminist perspectives, 2nd edn. New York: Palgrave Macmillan.CrossRefGoogle Scholar
Lucas, N. (2008). Mijn moeder had die keus niet. Interview with Ellen Groenewold. Trouw, 24 June.Google Scholar
Mat, J. (2008a). Mijn zus overleed toen ze 28 was. Het verhaal van Louise van Rossum (56) over haar borstkanker-gen. NRC Handelsblad, 7 June.Google Scholar
Mat, J. (2008b). In de praktijk: Hoe een beslissing over embryoselectie tot stand komt. NRC Handelsblad, 21 June.Google Scholar
Mee, T. van der (2008). Interview. Ellen laat haar embryo’s wél onderzoeken—De zware last van een gendrager. Interview with Ellen Groenewold. Algemeen Dagblad, 5 June.Google Scholar
Melchior, M. (2008). Ethische ruzie over acht cellen. Interview met Ellen Groenewold. Dag, 4 June.Google Scholar
Nederlands Dagblad (2008). Hinderlijk Calimero Rouvoet: wij willen onze waarheid niet opleggen. Nederlands Dagblad, 17 June.Google Scholar
Netwerk Television (2008) Genetische Borstkanker, 26 May. URL (accessed July 2009): http://www.netwerk.tv/search/node/embryoselectieGoogle Scholar
Noordhuis, P., & Soest, A. van (2008). Borstkankergen is geen zwaard van Damocles meer. Interview with Marijke. Ik ben dubbel over embryoselectie. Interview with Catrien van den Berg. Mijn tijden zijn in Gods hand. Interview with Annie van den Horst-Van den Top. Nederlands Dagblad, 7 June.Google Scholar
NOS journaal (2008). Kabinet eens over embryoselectie, 24 June. URL (accessed July 2009): http://europakiest.nos.nl/video/bekijk/id/tcm:5-389438/title/kabinet-eens-over-embryoselectieGoogle Scholar
NOVA/Den Haag Vandaag (2008). Besluit over embryoselectie uitgesteld, 30 May. URL (accessed October 2008): http://www.novatv.nl/page/detail/uitzendingen/6079/Besluit+over+embryoselectie+uitgesteldGoogle Scholar
NRC Handelsblad (2008). Principes in praktijk: Commentaar. NRC Handelsblad, 13 June.Google Scholar
Nussbaum, M.C. (2001). Upheavals of thought: The intelligence of emotions. Cambridge: Cambridge UP.CrossRefGoogle Scholar
Planningsbesluit klinisch genetisch onderzoek en erfelijkheidsadvisering (2003). Staatscourant, 23 January.Google Scholar
PvdA (2008). Debat over embryoselectie, 5 June. URL (consulted July 2009): http://www.pvda.nl/nieuws/nieuws/2008/06/Debat+over+embryoselectie.htmlGoogle Scholar
Reformatorisch Dagblad (2008). Commentaar: Onfatsoenlijk. Reformatorisch Dagblad, 5 June.Google Scholar
Schalkwijk, L. (2008). Gezonde baby is ook na kanker mogelijk. Interview met o.a. Christien. AD/Algemeen Dagblad, 13 June.Google Scholar
Schüngel-van der Haar, A. (2008). Dan was ik er niet geweest. Trouw, 12 June.Google Scholar
Snelders, S.A.M., Pieters, T., & Meijman, F.J. (2007). Medische omgang met erfelijke aspecten van kanker in Nederland, 1900–1980. Nederlands Tijdschrift voor Geneeskunde, 151, 712–715.Google ScholarPubMed
Stone, D. (2002). Policy paradox: The art of political decision making, rev. edn. New York: W.W. Norton.Google Scholar
Terstall, E., Duyvestein, M., & Amerongen, J. van. (2008). PvdA moet uit het kabinet stappen. Trouw, 13 June.Google Scholar
Visser, E. de (2008a). Natuurlijk ben ik boos geweest, en verdrietig. Interview met Esther Leeninga-Tijmes. de Volkskrant, 4 June.Google Scholar
Visser, E. de (2008b). ‘Vergis je niet in hoe zwaar die behandeling is’’. Interview met Emma van Leeuwen. de Volkskrant, 4 June 2008.Google Scholar
Visser, E. de (2008c). De grenzen van God: Achtergrond Embryoselectie. Interview met Henk Jochemsen. de Volkskrant, 14 June 2008.Google Scholar
Wessely, B. (2008). Weet de CU wel wat leven met kanker is? NRC.Next, 9 June. Republished in Metro, 10 June.Google Scholar
Wissen, M. van (2008). Laten we alsjeblieft nuchter blijven. Interview familie Jansen. Eindhovens Dagblad, 14 June.Google Scholar
Young, I.M. (1996) Communication and the other: Beyond deliberative democracy. In Benhabib, S. (Ed.), Democracy and difference: Contesting the boundaries of the political. Princeton, NJ: Princeton UP.Google Scholar