Difficult Questions and Ambivalent Answers on Genetic Testing


  • Andréa Wiszmeg Department of Arts and Cultural Sciences, Lund University, Sweden
  • Susanne Lundin Department of Arts and Cultural Sciences, Lund University, Sweden
  • Eva Torkelson Department of Psychology, Lund University, Sweden
  • Niclas Hagen Department of Arts and Cultural Sciences, Lund University, Sweden
  • Cecilia Lundberg CNS Gene Therapy, Lund University, Sweden




Genetic testing, risk, public attitude, responsibility, complexity, ambivalence


A qualitative pilot study on the attitudes of some citizens in southern Sweden toward predictive genetic testing – and a quantitative nation wide opinion poll targeting the same issues, was initiated by the Cultural Scientific Research Team of BAGADILICO. The latter is an international biomedical research environment on neurological disease at Lund University. The data of the two studies crystallized through analysis into themes around which the informants’ personal negotiations of opinions and emotions in relation to the topic centred: Concept of Risk,’Relations and Moral Multi-layers, Worry, Agency and Autonomy, Authority, and Rationality versus Emotion. The studies indicate that even groups of people that beforehand are non-engaged in the issue, harbour complex and ambivalent emotions and opinions toward questions like this. A certain kind of situation bound pragmatism that with difficulty could be shown by quantitative methods alone emerges. This confirms our belief that methodological consideration of combining quantitative and qualitative methods is crucial for gaining a more complex representation of attitudes, as well as for problematizing the idea of a unified public open to inquiry.


Arnoldi, Jakob (2009): Risk, Cambridge: Polity Press.

Bauman, Zygmunt (1993): Postmodern Ethics, Oxford: Blackwell.

Beck, Ulrich (1992): Risk Society: Towards a New Modernity, London: Sage.

Butler, Judith (2001): ‘Giving an Account of Oneself’, Diacritics, 31:4, 22–40.

Ferreira, Celio & Åsa Boholm (2005): ‘Kulturell riskhantering’, Osäkerhetens horisonter – Kulturella och etiska perspektiv på samhällets riskfrågor, Nora: Nya Doxa.

Frank, Arthur (1995): The Wounded Storyteller: Body, Illness and Ethics, Chicago: University of Chicago Press.

Franklin, Sarah (2006): ‘Embrynonic Economy: The Double Reproductive Value of Stem Cells’, BioSocieties, 2006:1, 71-90.

Gaskell, George, Sally Stares, Agnes Allansdottir, Nick Allum, Paula Castro, Yilmaz Esmer, Claude Fischler, Jonathan Jackson, Nicole Kronberger, Jürgen Hampel, Niels Mejlgaard, Alex Quintanilha, Andu Rammer, Gemma Revuelta, Paul Stoneman, Helge Torgersen & Wolfgang Wagner (2010): Europeans and Biotechnology in 2010: Winds of Change?, European Union Barometer by European Commission Directorate L—Science, Economy and Society, Unit L.3—Governance and Ethics, and Directorate E—Biotechnology, Agriculture and Food, Unit E.2—Biotechnology. Brussels: European Commission.

Gottweis, Herbert (2008): ‘Participation and the New Governance of Life’, BioSocieties, 3, 265–86. Cambridge University Press.

Hagen, Niclas (2011): ’I gränslandet mellan genotyp och fenotyp. Motsägelser i samband med prediktiv genetisk testning’, Socialmedicinsk tidskrift, 88:3, 266-273.

Hansson, Kristofer, Susanne Lundin, Jekaterina Kaleja, Aivita Putnina & Markus Idvall (2011): ’Framing the Public: ThePolicy Process around Xenotransplantation in Latvia and Sweden 1970 2004’, Science and Public Policy 38:8, 629–637.

Ideland, Malin & Tora Holmberg (2010): ‘Secrets and Lies: ‘Selective Openness’ in the Apparatus of Animal Experimentation’, Public Understanding of Science,1.

Khoury, Muin J., Wiley Burke & Elisabeth, J. Thomson (2000): Genetics and Public Health IN THE 21: st Century, Oxford: Oxford University Press.

Konrad, Monica (2005): Narrating the New Predictive Genetics: Ethics, Ethnography and Science, Cambridge: Cambridge University Press.

Lemke, Thomas (2004): ‘Disposition and Determinism: Genetic Diagnostics in Risk Society’, The Sociological Review, 52:4, 550-566.

Liljefors, Max, Susanne Lundin, Andréa Wiszmeg (eds): The Atomized Body. Stem Cells, Neurons and Genes in Society and Culture, Lund: Nordic academic Press (in press).

Lock, Margaret & Vinh-Kim Nguyen (2010): An Anthropology of Biomedicine, Chichester:Wiley Blackwell.

Lundberg Cecilia, Tomas Björklund, Thomas Carlsson, Johan Jakobsson, Philippe Hantraye, Nicole Déglon & Deniz Kirik (2008): ‘Applications of Lentiviral Vectors for Biology and Gene Therapy of Neurological Disorders’, Current Gene Therapy 2008, Dec, 8;6, 461-73.

Lundin, Susanne (2002): ‘Creating Identity with Biotechnology: The Xenotransplanted Body as a Norm’, Public Understanding of Science,11, 333-345.

Lundin, Susanne & Markus Idvall (2003): ‘Attitudes of Swedes to Marginal Donors and Xenotransplantation’, Journal of Medical Ethics, 29, 186-192.

Lundin, Susanne & Lynn Åkesson (eds) 2002: Genetechnology and Economy, Lund: Nordic Academic Press.

Mythen, Gabe (2007): ‘Reappraising the Risk Society Thesis: Telescopic Sight or Myopic Vision?’, Current Sociology, 55: 793-813.

Novas, Carlos & Nikolas Rose (2000): ‘Genetic Risk and the Birth of the Somatic Individual’, Economy and Society, Special Issue on configurations of risk (2000), 29:4, 484-513.

O’Malley, Pat (1996): ‘Risk and Responsibility’, Andrew Barry, Thomas Osborne, Nikolas Rose (eds) Foucault and Political Reason, Chicago: The University of Chicago Press.

Plows, Alexandra (2011): Debating Human Genetics, London: Routledge.

Rose, Nikolas (1996): ‘Governing “Advanced” Liberal Democracies’, Andrew Barry, Thomas Osborne & Nikolas Rose(eds) Foucault and Political Reason, Chicago: The University of Chicago Press.

Sachs, Lisbeth (1998): Att leva med risk: Fem kvinnor, gentester och kunskapens frukter, Stockholm: Gedins förlag.

Tibben, Aad (2007): ‘Predictive Testing for Huntington´s Disease’, Brain Research Bulletin 72, 165-171.

Torkelson, Eva, Tuija Muhonen & José Maria Peiró (2007): ‘Constructions of Work Stress and Coping in a Female- and Male-Dominated Department’, Scandinavian Journal of Psychology,48: 261–270.

Wexler, Alice (1996): Mapping Fate –A Memoir of Family, Risk, and Genetic Research, Berkeley: University of California Press.

Åkesson, Lynn (1999): ‘Selection and Perfection: Modern Genetics and the Alien Inside’, Amalgamations: Fusing Technology and Culture, Lund: Nordic Academic Press.






Theme: Self-care Translated into Practice