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

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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.

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Notes

  1. 1 BRCA mutation carriers have a mutation in the Breast CAncer genes (BRCA-1 and BRCA-2 gene), which predisposes them to develop breast cancer, often before the age of 50.

  2. 2 In their review of the relationships between science and citizenship, Melissa Leach and Ian Scoones argue that citizenship as engagement with scientific controversies, where citizens bring their own experiential expertise to bear, may now be ‘a key context where citizenship practices are played out in new, important ways’ (2005: 31).

  3. 3 In a UK study on media representations of inherited breast cancer, Henderson and Kitzinger (1999: 74) also observed that personal stories of women with inherited breast cancer introduced soft values, uncertainty and ‘shades of grey’.

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Acknowledgements

For their helpful feedback on early drafts of this work, the author would like to thank the anonymous reviewers, and the participants of the International Expert Seminar ‘Towards a “Lingua Democratica” for the Public Debate on Genomics’, University for Humanistics, Utrecht, 9–11 October 2008—especially Peter Derkx and Cor van der Weele. For editing, thanks to Sheila Gogol.

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  1. Erasmus University Rotterdam, Faculty of Philosophy, PO Box 1738, Rotterdam, 3000 DR, The Netherlands

    Marli Huijer

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Huijer, M. Storytelling to Enrich the Democratic Debate: The Dutch Discussion on Embryo Selection for Hereditary Breast Cancer. BioSocieties 4, 223–238 (2009). https://doi.org/10.1017/S1745855209990238

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