The first genetic screening in Finland: Its execution, evaluation and some possible implications for liberal government

Critical Public Health

Volumn 12, Issue 3, 2002, Pages 251-264

  Poutanen, Seppo ^a  

^a UNIVERSITY OF PLYMOUTH   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ASPARTYLGLYCOSAMINURIA; BAYES THEOREM; EVALUATION; EXPERIENCE; FEASIBILITY STUDY; FEMALE; FINLAND; GENETIC SCREENING; GEOGRAPHIC DISTRIBUTION; GOVERNMENT; HEALTH CARE PLANNING; HETEROZYGOSITY; HUMAN; MEDICAL DECISION MAKING; MEDICAL INFORMATION SYSTEM; MEDICAL RESEARCH; PATIENT ATTITUDE; PILOT STUDY; PRIMARY HEALTH CARE; RELATIVE;

EID: 0036750356     PISSN: 09581596     EISSN: None     Source Type: Journal    
DOI: 10.1080/09581590210153380     Document Type: Article

References (32)

1. Aula, P. & Leisti, J (1994) Mutaation tunnistamisesta väestön kartoitukseen. Duodecim, 110, pp. 749-756.
2. Bell, D. E., Raiffa, H. & Tversky, A (1988) Decision Making: Descriptive, Normative and Prescriptive Interactions (Cambridge & New York, Cambridge University Press).
3. CAHBI (1991) Recommendation No. R92(3) (Brussels, Council of Europe).
4. Dean, M. (1999) Governmentality: Power and Rule in Modern Society (London/Thousand Oaks/New Delhi, Sage).
5. Foucault, M (1979) The History of Sexuality, Vol. 1: An Introduction (London, Allen Lane).
6. Foucault, M. (1991) Governmentality. In: Burchell, G., Gordon, G. & Miller, P. (eds) The Foucault Effect: Studies in Governmentality (Chicago, University of Chicago Press).
7. Fox, N.J. (1997) Is there life after Foucault? Texts, frames and differends. In: Petersen, A. & Bunton, R. (eds) Foucault, Health and Medicine (London & New York, Routledge).
8. Gordon, C. (1991) Governmental rationality: an introduction. In: Burchell, G., Gordon, G. & Miller, P. (eds) The Foucault Effect. Studies in Governmentality (Chicago, University of Chicago Press).
9. Hietala, M. (1998) Prospects for Genetic Screening in Finland: Evaluation of the Feasibility of Carrier Screening in Primary Health Care using Aspartylglucosaminuria Carrier Screening as the Model. PhD thesis, University of Turku, Turku, Finland.
10. Hietala, M., Grön, K., Syvänen, A.-C., Peltonen, L. & Aula, P. (1993) Prospects of carrier screening of aspartylglucosaminuria in Finland. European Journal of Human Genetics, 1, pp.296-300.
11. Hietala, M., Hakonen, A., Aro, A.R., Niemelä, P., Peltonen, L. & Aula, P. (1995) Attitudes toward genetic testing among the general population and relatives of patients with a severe genetic disease: a survey from Finland. American Journal of Human Genetics, 56, pp. 1493-1500.
12. Hietala, M., Aula, P., Syvänen, A.-C., Isoniemi, A., Peltonen, L. & Palotie, A. (1996) DNA-based carrier screening in primary healthcare: screening for aspartylglucosaminuria in maternity health care offices. Clinical Chemistry, 42, pp. 1398-1404.
13. Hietala, M., Hakonen, A., Aro, A.R., Niemelä, P., Peltonen, L. & Aula, P. (1998) Acceptance and experiences of carrier screening among Finnish pregnant women and primary care nurses: a pilot study using an aspartylglucosaminuria gene test. Published as one of the original communications in Hietala (1998).
14. Hill, P.H., Bedau, H.A., Chechile, R.A., Crochetiere, W.J., Kellerman, B.L., Ounjian, D., Pauker, S.G., Pauker, S.P. & Rubin, J. Z. (1979) Making Decisions: A Multidisciplinary Introduction (Reading, MA., Addison-Wesley).
15. Ikonen, E. & Palotie, L. (1994) AGU-tauti: pistemutaatio kehitysvammaisuuden syynä. Duodecim, 110,pp.667-673.
16. Isoniemi, A., Hietala, M., Aula, P., Jalanko, A. & Peltonen, L. (1995) Identification of a novel mutation causing aspartylglucosaminuria reveals a mutation hotspot region in the aspartylglucosaminidase gene. Human Mutation, 5, pp. 318-326.
17. Jallinoja, P. & Aro, A.R .(2000) Does knowledge make a difference? The association between knowledge about genes and attitudes toward gene tests. Journal of Health Communication, 5, pp.29-39.
18. Jallinoja, P., Hakonen, A., Aro, A.R., Niemel-dsa, P., Hietala, M., Lönnqvist, J., Peltonen, L. & Aula, P. (1998) Attitudes towards genetic testing: analysis of contradictions. Social Science & Medicine 46, pp. 1367-1374.
19. Louhiala, P. (1994) Suostumuksen ongelmia. Suomen Lääkärilehti, 49, p. 339.
20. Naglie, G., Krahn, M.D., Naimark, D., Redelmeier, D.A. & Detsky, A.S. (1997) Primer on medical decision analysis, Part 3: Estimating probabilities and utilities. Medical Decision Making, 17, pp.136-141.
21. Norio, R., Nevanlinna, H.R. & Perheentupa, J. (1973) Hereditary diseases in Finland; rare flora in rare soil. Annals of Clinical Research, 5, pp. 109-141.
22. O'Malley, P. (1996) Risk and responsibility. In: Barry, A., Osborne, T. & Rose, N. (eds) Foucault and Political Reason: Liberalism, neo-Liberalism and Rationalities of Government (London, UCL Press).
23. Petersen, A. (1997) Risk, governance and the new public health. In: Petersen, A. & Bunton, R. (eds) Foucault, Health and Medicine (London & New York, Routledge).
24. Rose, N. (1998) Inventing Our Selves. Psychology, Power, and Personhood (first published in 1996) (Cambridge & New York & Melbourne, Cambridge University Press).
25. Rose, N. (1999) Powers of Freedom: Reframing Political Thought (Cambridge/New York/Melbourne, Cambridge University Press).
26. Smith, J.Q. (1988) Decision Analysis.- A Bayesian Apprvach (London, Chapman & Hall).
27. Syvänen, A.-C., Ikonen, E., Manninen, T., Bengtström, M., Söderlund, H., Aula, P. & Peltonen, L. (1992) Convenient and quantitative determination of the frequency of a mutant allele using solid-phase minisequencing: application to aspartylglucosaminuria in Finland. Genomics, 12, pp. 590-595.
28. Tilastokeskus (1997) Suomen tilastollinen vuosikirja 1997 (Helsinki, Tilastokeskus).
29. Tilastokeskus (2000) Taskutilasto 2000 (Helsinki, Tilastokeskus).
30. Turner, B.S. (1997) Foreword: From governmentality to risk, some reflections on Foucault's contribution to medical sociology. In: Petersen, A. & Bunton, R. (eds) Foucault, Health and Medicine (London & New York, Routledge).
31. Ubel, P.A. & Loewenstein, G. (1997) The role of decision analysis in informed consent: choosing between intuition and systematicity. Social Science & Medicine, 44, pp. 647-656.
32. Valkonen, S., Hietala, M., Savontaus M.-L. & Aula, P. (1999) Origin of Finnish mutations causing aspartylglucosaminuria. Hereditas, 131, pp. 191-195.