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New Genetics and Society
Critical Studies of Contemporary Biosciences
Volume 31, 2012 - Issue 4
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Articles

National interests and international collaboration: tensions and ambiguity among Finns towards usages of tissue samples

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Pages 424-441 | Published online: 07 Aug 2012

References

  • Asai, A., et al., 2004. Focus group interviews examining attitudes towards medical research among the Japanese: a qualitative study, Bioethics 18 (5) (2004), pp. 448–470, (doi:10.1111/j.1467-8519.2004.00409.x).
  • Asslaber, M., and Zatloukal, K., 2007. Biobanks: transnational, European and global networks, Briefings in Functional Genomics & Proteomics 6 (3) (2007), pp. 193–201, (doi:10.1093/bfgp/elm023).
  • Axler, R., et al., 2008. Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research, Pathobiology 75 (6) (2008), pp. 323–329, (doi:10.1159/000164216).
  • BBMRI, 2008. Biobanking and biomolecular resource research infrastructure [online]. Available from: http://www.biobanks.eu/ [Accessed 9 September 2008]..
  • Busby, H., and Martin, P., 2006. Biobanks, national identity and imagined communities: the case of UK Biobank, Science as Culture 15 (3) (2006), pp. 237–251, (doi:10.1080/09505430600890693).
  • Chalmers, D., and Nicol, D., 2004. Commercialization of biotechnology: public trust and research, International Journal of Biotechnology 6 (2/3) (2004), pp. 116–133, (doi:10.1504/IJBT.2004.004806).
  • Critchley, C. R., 2008. Public opinion and trust in scientists: the role of the research context, and the perceived motivation of stem cell researchers, Public Understanding of Science 17 (3) (2008), pp. 309–327, (doi:10.1177/0963662506070162).
  • Critchley, C. R., et al., 2012. Predicting intention to biobank: a national survey, European Journal of Public Health 22 (1) (2012), pp. 139–144, (doi:10.1093/eurpub/ckq136).
  • Eriksson, K. E., et al., 2007. "A sociological perspective: public perceptions of privacy and their trust in institutions managing and regulating genetic databases". In: Häyry, M., et al., eds. The ethics and governance of human genetic databases. Cambridge: Cambridge University Press; 2007. pp. 43–89.
  • European Commission, 2002a. Life science and biotechnology: a strategy for Europe. Luxembourg: Office for Official Publications of the European Union; 2002a.
  • European Commission, 2002b. Science and society: action plan. Luxembourg: Office for Official Publications of the European Communities; 2002b.
  • Flick, U., 1992. Triangulation revisited: strategy of validation or alternative?, Journal for the Theory of Social Behaviour 22 (2) (1992), pp. 175–197, (doi:10.1111/j.1468-5914.1992.tb00215.x).
  • Gaskell, G., and Gottweis, H., 2011. Biobanks need publicity, Nature 471 (2011), pp. 159–160, (doi:10.1038/471159a).
  • Godard, B., Marshall, J., and Laberge, C., 2007. Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project, Community Genetics 10 (3) (2007), pp. 147–158, (doi:10.1159/000101756).
  • Godard, B., et al., 2010. Ethnocultural community leaders' views and perceptions on biobanks and population specific genomic research: a qualitative research study, Public Understanding of Science 19 (2010), pp. 469–485, (doi:10.1177/0963662509104721).
  • Gottweis, H., Chen, H., and Starkbaum, J., 2011. Biobanks and the phantom public, Human Genetics 130 (3) (2011), pp. 433–440, (doi:10.1007/s00439-011-1065-y).
  • Gottweis, H., and Lauss, G., 2010. Biobank governance in the post-genomic age, Personalized Medicine 7 (2) (2010), pp. 187–195, (doi:10.2217/pme.10.4).
  • Gottweis, H., and Petersen, A., 2008. Gottweis, H., and Petersen, A., eds. Biobanks: governance in comparative perspective. London: Routledge; 2008.
  • Goven, J., 2008. Assessing genetic testing: who are the “lay experts”?, Health Policy 85 (1) (2008), pp. 1–18, (doi:10.1016/j.healthpol.2007.06.004).
  • Haddow, G., et al., 2007. Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal, Social Science & Medicine 64 (2007), pp. 272–282, (doi:10.1016/j.socscimed.2006.08.028).
  • Haimes, E., and Whong-Barr, M., 2004. "Levels and styles of participation in genetic databases: a case study of the North Cumbria Community Genetics Project". In: Tutton, R., and Corrigan, O., eds. Genetic databases: socio-ethical issues in the collection and use of DNA. London: Routledge; 2004. pp. 57–77.
  • Hansen, J., 2006. Operationalising the public in participatory technology assessment: a framework for comparison applied to three cases, Science and Public Policy 33 (8) (2006), pp. 571–584, (doi:10.3152/147154306781778678).
  • Hansson, M. G., and Levine, M., 2003. Hansson, M. G., and Levine, M., eds. Biobanks as resources for health. Uppsala: Universitetstryckeriet; 2003.
  • Helén, I., 2004. Health in prospect – high-tech medicine, life enhancement and the economy of hope, Science Studies 17 (1) (2004), pp. 3–19.
  • Hemminki, E., et al., 2009. Finnish people's attitudes towards biomedical research and its sponsorship, Genomics, Society and Policy 5 (2) (2009), pp. 67–79.
  • Hoeyer, K., 2010. Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity?, Public Health Genomics 13 (6) (2010), pp. 345–352, (doi:10.1159/000262329).
  • Hoeyer, K., et al., 2004. Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research, Scandinavian Journal of Public Health 32 (3) (2004), pp. 224–229, (doi:10.1080/14034940310019506).
  • Ivankova, N., Creswell, J., and Stick, S., 2006. Using mixed methods sequential explanatory design: from theory to practice, Field Methods 18 (1) (2006), pp. 3–20, (doi:10.1177/1525822X05282260).
  • Jepson, R. G., et al., 2007. Patient perspectives on information and choice in cancer screening: a qualitative study in the UK, Social Science & Medicine 65 (5) (2007), pp. 890–899, (doi:10.1016/j.socscimed.2007.04.009).
  • Kettis-Lindblad, Å., et al., 2006. Genetic research and donation of tissue samples to biobanks. What do potential donors in the Swedish general public think?, European Journal of Public Health 16 (4) (2006), pp. 433–440, (doi:10.1093/eurpub/cki198).
  • Kelle, U., 2001. Sociological explanations between micro and macro and the integration of qualitative and quantitative methods, Forum Qualitative Sozialforschung/Forum: Qualitative Social Research 2 (1) (2001), Art. 5.
  • Kere, J., 2007. Miten Suomessa kerättyjä DNA- ja kudosnäytteitä voidaan hyödyntää [How can DNA and tissue samples collected in Finland be utilized]?, Duodecim 123 (2007), pp. 864–866.
  • Knoppers, B. M., 2003. Knoppers, B. M., ed. Populations and genetics: legal and socio-ethical perspectives. Leiden: Martinus Nijhoff; 2003.
  • Lemke, A., et al., 2010. Public and biobank participant attitudes toward genetic research participation and data sharing, Public Health Genomics 13 (6) (2010), pp. 368–377.
  • Lincoln, Y. S., and Guba, E. G., 1985. Naturalistic inquiry. Thousand Oaks, CA: Sage; 1985.
  • Mayrhofer, M., 2008. "Patient organizations as the (un)usual suspects". In: Gottweis, H., and Petersen, A., eds. Biobanks: governance in comparative perspective. Abingdon: Routledge; 2008. pp. 71–87.
  • Mayrhofer, M., and Prainsack, B., 2008. Being a member of the club: the transnational (self-) governance of biobank networks, International Journal on Risk Assessment & Management 12 (1) (2008), pp. 64–81, (doi:10.1504/IJRAM.2009.024130).
  • M'charek, A., 2005. The Human Genome Diversity Project: an ethnography of scientific practice. Cambridge: Cambridge University Press; 2005.
  • Merton, R. K., 1973. The sociology of science: theoretical and empirical investigations. Chicago, IL: University of Chicago Press; 1973.
  • Mitchell, R., and Waldby, C., 2010. National biobanks: clinical labor, risk production, and the creation of biovalue, Science, Technology & Human Values 35 (3) (2010), pp. 330–355, (doi:10.1177/0162243909340267).
  • Morgan, D. L., 2007. Paradigms lost and pragmatism regained: methodological implications of combining qualitative and quantitative methods, Journal of Mixed Methods Research 1 (2007), pp. 48–76, (doi:10.1177/2345678906292462).
  • Novas, C., 2007. "Genetic advocacy groups, science and biovalue: creating political economies of hope". In: Atkinson, P., Glasner, P., and Greenslade, H., eds. New genetics, new identities. Abingdon: Routledge; 2007. pp. 11–27.
  • Owen-Smith, J., and Powell, W., 2002. Standing on shifting terrain: faculty responses to the transformation of knowledge and its uses in the life sciences, Science Studies 15 (1) (2002), pp. 3–28.
  • Rabinow, P., 1999. French DNA: trouble in purgatory. Chicago, IL: University of Chicago Press; 1999.
  • Sihvo, S., et al., 2007. Väestö, biopankit ja lääketieteellinen tutkimus. Suomalaisten suhtautuminen lääketieteellisten näytteiden käyttöön. 2007, Stakes Working Paper No. 18.
  • Snell, K., 2009. Social responsibility in developing new biotechnology: interpretations of responsibility in the governance of Finnish biotechnology. 2009, Thesis (PhD). University of Helsinki.
  • Snell, K., et al., 2012. From protection of privacy to control of data streams: a focus group study on biobanks in the information society, Public Health Genomics 15 (5) (2012), pp. 293–302, (doi:10.1159/000336541).
  • Stegmayr, B., and Asplund, K., 2002. Informed consent for genetic research on blood stored for more than a decade: a population based study, British Medical Journal 325 (2002), pp. 634–635, (doi:10.1136/bmj.325.7365.634).
  • Sunder Rajan, K., 2006. Biocapital: the constitution of postgenomic life. Durham, NC: Duke University Press; 2006.
  • Tamminen, S., 2010. Calculating life: nation, nature, and the nativisation of nonhuman genetics. 2010, Thesis (PhD). University of Helsinki.
  • Tober, D. M., 2001. Semen as gift, semen as goods: reproductive workers and the market in altruism, Body & Society 7 (2–3) (2001), pp. 137–160, (doi:10.1177/1357034X0100700205).
  • Treweek, S., Doney, A., and Leiman, D., 2009. Public attitudes to the storage of blood left over from routine general practice tests and its use in research, Journal of Health Services Research & Policy 14 (2009), pp. 13–19, (doi:10.1258/jhsrp.2008.008016).
  • Tupasela, A., 2007. Re-examining medical modernization: framing the public in Finnish biomedical research policy, Public Understanding of Science 16 (1) (2007), pp. 63–78, (doi:10.1177/0963662506070182).
  • Tupasela, A., 2008. Consent practices and biomedical knowledge production in tissue economies. 2008, Thesis (PhD). University of Helsinki.
  • Tupasela, A., 2011. From gift to waste: changing policies in biobanking practices, Science and Public Policy 38 (7) (2011), pp. 510–520, (doi:10.3152/030234211X12960315268056).
  • Tupasela, A., et al., 2010. Attitudes towards biomedical use of tissue sample collections, consent and biobanks among Finns, Scandinavian Journal of Public Health 38 (2010), pp. 46–52, (doi:10.1177/1403494809353824).
  • Tutton, R., 2007. Constructing participation in genetic databases: citizenship, governance and ambivalence, Science, Technology & Human Values 32 (2) (2007), pp. 172–195, (doi:10.1177/0162243906296853).
  • Tutton, R., and Corrigan, O., 2004. Tutton, R., and Corrigan, O., eds. Genetic databases: socio-ethical issues in the collection and use of DNA. London: Routledge; 2004.
  • Waldby, C., 2002. Stem cells, tissue cultures and the production of biovalue, Health: An Interdisciplinary Journal for the Study of Health, Illness and Medicine 6 (3) (2002), pp. 305–323, (doi:10.1177/136345930200600304).
  • Waldby, C., and Mitchell, R., 2006. Tissue economies: blood, organs, and cell lines in late capitalism. Durham, NC: Duke University Press; 2006.

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