Hostname: page-component-586b7cd67f-dlnhk Total loading time: 0 Render date: 2024-11-30T01:16:36.144Z Has data issue: false hasContentIssue false
  • English
  • Français

Between Neutrality and Engagement: A Case Study of Recruitment to Pharmacogenomic Research in Denmark

Published online by Cambridge University Press:  01 December 2008

Mette N. Svendsen  and
Lene Koch
Mette N. Svendsen
Affiliation:
Institute of Public Health, Department of Health Services Research, University of Copenhagen, Denmark E-mail: [email protected]
Lene Koch
Affiliation:
Institute of Public Health, Department of Health Services Research, University of Copenhagen, Denmark E-mail: [email protected]
Get access

Abstract

Post-genomic research relies on blood samples and health information from great numbers of individuals as well as on access to medical records. Studies of collecting and banking bio-resources have increasingly focused on the policy and commodification issues that arise when human DNA enters the information economy. Yet, what has been given much less attention is the process through which citizens are recruited to contribute to post-genomic research. This article analyses practices of recruiting psychiatric patients to a pharmacogenomic research centre in Denmark. It argues that recruitment activities may be conceived as interpellation practices that ‘hail’ individual patients and ask them to place themselves in relationships to other citizens and state institutions by giving researchers access to blood samples, medical records and sensitive life-and-illness information. The interpellation practices studied demonstrate a tension between techniques that operate through distance (sending out letters with information and consent forms) and techniques that operate through presence (making phone calls to patients). These techniques are not simply seen as contrasting ethical conducts, but as complementary and coexisting ways of constituting spatial and social state–citizen relationships.

Keywords

Ethics as PracticeInterpellationPharmacogenomicsRecruitment
Type
Articles
Information
BioSocieties , Volume 3 , Issue 4 , December 2008 , pp. 399 - 418
Copyright
Copyright © London School of Economics and Political Science 2008

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

Althusser, L. (1971). Ideology and ideological state apparatuses (notes towards an investigation). In Althusser, L. (Ed.), Lenin and philosophy and other essays, 127–186. New York: Monthly Review Press.Google Scholar
Appelbaum, P.S., Grisso, T., Frank, E., O'Donnell, S., & Kupfer, D.J.(1999). Competence of depressed patients for consent to research. American Journal of Psychiatry, 156, 1380–1384.CrossRefGoogle ScholarPubMed
Appelbaum, P.S., Roth, L.H., Lidz, C.W., Benson, P., & Winslade, W. (1987). False hopes and best data: Consent to research and the therapeutic misconception. Hastings Center Report, 17, 20–24.CrossRefGoogle ScholarPubMed
Barr, M. (2006). ‘I'm not really up on genetics’: Biobanks and the social context of informed consent. BioSocieties, 1, 251–262.CrossRefGoogle Scholar
Beskow, L.M., Burke, W., Merz, J.F., Barr, P.A., Terry, S., Penchaszadeh, V.B. et al. (2001). Informed consent for population-based research involving genetics. Journal of the American Medical Association, 286, 2315–2321.CrossRefGoogle ScholarPubMed
Binder, R.L., & Guze, S.B. (1998). Guidelines for assessing the decision-making capacities of potential research subjects with cognitive impairment. Washington: American Psychiatric Association.Google Scholar
Bister, M.D., Felt, U., Strassnig, M., & Wagner, U. (in press). Refusing the information paradigm: Informed consent, medical research, and patient participation. Health.Google Scholar
Brodwin, P. (2008). The coproduction of moral discourse in US community psychiatry. Medical Anthropology Quarterly, 22, 127–147.CrossRefGoogle ScholarPubMed
Busby, H. (2007). Biobanks, bioethics and concepts of donated blood in the UK. In De Vries, R.G., Turner, L., Orfali, K., & Bosk, C. (Eds.), The view from here: Bioethics and the social sciences, 179–193. Oxford: Blackwell Publishing.Google Scholar
Busby, H. (2006). Consent, trust and ethics: Reflections on the findings of an interview-based study with people donating blood for genetic research for research within the NHS. Clinical Ethics, 1,1–5.CrossRefGoogle Scholar
Butler, J. (1997). Excitable speech: A politics of the performative. New York: Routledge.Google Scholar
Callon, M., & Law, J. (2004). Guest editorial. Environment and Planning D: Society and Space, 22, 3–11.CrossRefGoogle Scholar
Chadwick, R., & Berg, K. (2001). Solidarity and equity: New ethical frameworks for genetic databases. Nature Reviews Genetics, 2, 318–321.CrossRefGoogle ScholarPubMed
Christensen, S., & Sandberg, M. (forthcoming). Subjektivering og identitet [Subjectification and identity]. In Christensen, S., Jespersen, A., & Mellemgaard, S. (Eds.), Kulturteori. En grundbog i etnologi [Cultural theory: An introduction to European ethnology].Google Scholar
Corrigan, O.P., & Williams-Jones, B. (2006). Pharmacogenetics: The bioethical problem of DNA investment banking. Studies in History and Philosophy of Biological and Biomedical Sciences, 37, 550–565.CrossRefGoogle ScholarPubMed
Davis, A.M., Hull, S.C., Grady, C., Wilfond, B.S., & Henderson, G.E. (2002). The invisible hand in clinical research: The study coordinator's critical role in human subjects protection. Journal of Law, Medicine & Ethics, 30, 411–419.CrossRefGoogle Scholar
Despret, V. (2004). The body we care for: Figures of anthropo-zoo-genesis. Body & Society, 10, 111–134.CrossRefGoogle Scholar
Ducournau, P. (2007). The viewpoint of DNA donors on the consent procedure. New Genetics and Society, 26, 105–116.CrossRefGoogle Scholar
Easter, M.M., Henderson, G.E., Davis, A.M., Churchill, L.R., & King, N.M.P. (2007). The many meanings of care in clinical research. In De Vries, R.G., Turner, L., Orfali, K., & Bosk, C. (Eds.), The view from here: Bioethics and the social sciences, 30–47). Oxford: Blackwell Publishing.Google Scholar
Everett, M. (2007). The ‘I’ in the gene: Divided property, fragmented personhood, and the making of a genetic privacy law. American Ethnologist, 34, 375–386.CrossRefGoogle Scholar
Fisher, J.A. (2007). Co-ordinating ‘ethical’ clinical trials: The role of research coordinators in the contract research industry. In De Vries, R.G., Turner, L., Orfali, K., & Bosk, C. (Eds.), The view from here: Bioethics and the social sciences, 13–29. Oxford: Blackwell Publishing.Google Scholar
Fox, R.C. (1996). Experiment perilous: Forty-five years as a participant observer of patient-oriented clinical research. Perspectives in Biology and Medicine, 39, 206–226.CrossRefGoogle ScholarPubMed
Gumbrecht, H.U. (2004). Production of presence: What meaning cannot convey. Stanford, CA: Stanford UP.Google Scholar
Haimes, E., & Whong-Barr, M. (2004b). Levels and styles of participation in genetic databases: A case study of the North Cumbria Community Genetics Project. In Tutton, R., & Corrigan, O. (Eds.), Genetic databases: Socio-ethical issues in the collection and use of DNA, pp. 57–77. London: Routledge.Google Scholar
Haimes, E., & Whong-Barr, M. (2004a). Key issues in genetic epidemiology: Lessons from a UK-based empirical study. TRAMES Journal of the Humanities and Social Sciences, 8, 150–163.CrossRefGoogle Scholar
Harris, J. (1997). The ethics of clinical research with cognitively impaired subjects. Journal of Medical Ethics, 31, 242–248.CrossRefGoogle Scholar
Harris, J. (2005). Scientific research is a moral duty. Journal of Medical Ethics, 31, 242–248.CrossRefGoogle ScholarPubMed
Hedgecoe, A., & Martin, P. (2003). The drugs don't work: Expectations and the shaping of pharmacogenetics. Social Studies of Science, 33, 327–364.CrossRefGoogle ScholarPubMed
Hoeyer, K. (2003). ‘Science is really needed—that's all I know’: Informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden. New Genetics and Society, 22, 229–244.CrossRefGoogle ScholarPubMed
Hoeyer, K. (2005). Studying ethics as policy: The naming and framing of moral problems in genetic research. Current Anthropology, 46, 71–90.CrossRefGoogle Scholar
Hoeyer, K. (2007). The power of ethics: A case study from Sweden on the social life of moral concerns in policy processes. In De Vries, R.G., Turner, L., Orfali, K., & Bosk, C. (Eds.), The view from here. Bioethics and the social sciences, 117–132. Oxford: Blackwell Publishing.Google Scholar
Hoeyer, K., Olofsson, B.-O., Mjörndal, T., & Lynöe, N. (2005). The ethics of research using biobanks: Is informed consent donors’ main interest? Archives of Internal Medicine, 165, 97–100.CrossRefGoogle Scholar
Jackson, M. (1998). Minima ethnographica: Intersubjectivity and the anthropological project. Chicago: U Chicago Press.Google Scholar
Koch, L., & Svendsen, M.N. (2005). Providing solutions, defining problems: The imperative of disease prevention in cancer genetic counselling. Social Science and Medicine, 60, 823–832.CrossRefGoogle Scholar
Lakoff, A., & Collier, S.J. (2004). Ethics and the anthropology of modern reason. Anthropological Theory, 4, 419–434.CrossRefGoogle Scholar
Latimer, J. (2007). Diagnosis, dysmorphology, and the family: Knowledge, motility, choice. Medical Anthropology, 26, 97–138.CrossRefGoogle ScholarPubMed
Law, J. (2002). Aircraft stories: Decentering the object in technoscience. Durham, NC: Duke UP.Google Scholar
Mueller, M.-R. (1997). Science versus care: Physicians, nurses, and the dilemma of clinical research. In Elston, M.A. (Ed.), The sociology of medical science and technology, 57–78. Oxford: Blackwell Publishing.Google Scholar
Nettleton, S. (1998). Governing the risky self: How to become healthy, wealthy and wise. In Petersen, A., & Bunton, R. (Eds.), Foucault, health and medicine, 207–222. London: Routledge.Google Scholar
Ong, W.J. (1982). Orality and literacy: The technologizing of the word. London: Methuen.CrossRefGoogle Scholar
Pálsson, G., & Rabinow, P. (1999). Iceland: The case of a national human genome project. Anthropology Today, 15, 14–18.CrossRefGoogle ScholarPubMed
Parry, B. (2004). Trading the genome: Investigating the commodification of bio-information. New York: Columbia UP.CrossRefGoogle Scholar
Petryna, A. (2007). Clinical trials offshored: On private sector science and public health. BioSocieties, 2, 21–40.CrossRefGoogle Scholar
Phillips, M.S., Joly, Y., Silverstein, T., & Avard, D. (2007). Consent in parmacogenomic research. GenEdit, 5, 1–9.Google Scholar
Rabinow, P. (1996). Artificiality and enlightenment: From sociobiology to biosociality. In Rabinow, P. (Ed.), Essays on the anthropology of reason, 91–111. Princeton, NJ: Princeton UP.Google Scholar
Rose, H. (2003). The commodification of virtual reality: The Icelandic Health Sector Database. In Goodman, A.H.,Heath, D., & Lindee, M.S. (Eds.), Genetic nature/culture: Anthropology and science beyond the two-culture divide, 77–92. Los Angeles: U California Press.Google Scholar
Rose, N., & Novas, C. (2005). Biological citizenship. In Ong, A. &Collier, S.J. (Eds.), Global assemblages—Technology, politics, and ethics as anthropological problems, 439–463. Oxford: Blackwell Publishing.Google Scholar
Rothman, D.J. (1984). Strangers at the bedside: A history of how law and bioethics transformed medical decision making. New York: Harper & Row.Google Scholar
Skolbekken, J.-A., Ursin, L.Ø., Solberg, B., Christensen, E., & Ytterhus, B. (2005). Not worth the paper it's written on? Informed consent and biobank research in a Norwegian context. Critical Public Health, 15, 335–347.CrossRefGoogle Scholar
Star, S.L., & Griesemer, J.R. (1989). Institutional ecology, ‘translations’ and boundary objects: Amateurs and professionals in Berkeley's Museum of Vertebrate Zoology, 1907–39. Social Studies of Science, 19, 387–420.CrossRefGoogle Scholar
Stegmayr, B., & Asplund, K. (2002). Informed consent for genetic research on blood stored for more than a decade: A population-based study. British Medical Journal, 325, 534–635.CrossRefGoogle ScholarPubMed
Svendsen, M.N. (2006). The social life of genetic knowledge: A case-study of choices and dilemmas in cancer genetic counselling in Denmark. Medical Anthropology, 25, 139–170.CrossRefGoogle ScholarPubMed
Svendsen, M.N. (2007). Between reproductive and regenerative medicine: Practising embryo donation and civil responsibility in Denmark. Body & Society, 13, 21–45.CrossRefGoogle Scholar
Taussig, K.-S., Rapp, R., & Heath, D. (2003). Flexible eugenics: Technologies of the self in the age of genetics. In Goodman, A.H., Heath, D., & Lindee, M.S. (Eds.), Genetic nature/culture: Anthropology and science beyond the two-culture divide, 58–76. Los Angeles: U California Press.Google Scholar
Tutton, R., & Corrigan, O. (2004). Person, property and gift: Exploring languages of tissue donation to biomedical research. In Tutton, R., & Corrigan, O. (Eds.), Genetic databases: Socio-ethical issues in the collection and use of DNA, 19–38. London: Routledge.Google Scholar
Waldby, C., & Mitchell, R. (2006). Tissue economies: Blood, organs, and cell lines in late capitalism. Durham: Duke UP.Google Scholar
World Medical Association (1964, with amendments 2002). URL (consulted March 2008): www.wma.net/e/policy/b3.htmGoogle Scholar