Preferencje help
Widoczny [Schowaj] Abstrakt
Liczba wyników
2015 | nr 1 (189) | 107--127
Tytuł artykułu

Lay Constructions of Genetic Risk : A Case-study of the Polish Society of Huntington's Disease

Warianty tytułu
Języki publikacji
This article explores the lay constructions of genetic risk, the right not to know and the obligation to do a genetic test, know the risk and share genetic information with others. The study was carried out on 27 members of the Polish Society of Huntington's Disease. I describe their understanding of bioethics and their arguments for and against the right not to know. I argue that lay perceptions of the risk, rights and obligations mentioned above are shaped not only by the type of genetic disease involved but also depend on the social group to which it poses a threat and/or costs. Consequently, such obligations are framed toward: future generations, family members, society, the State and oneself. I also argue that genetics is turning families into bioethicists who, as lay experts, become one of the key players in the biomedicalization of society and bioethicization of genetic discourse.(original abstract)
Opis fizyczny
  • Poznań University of Medical Sciences
  • Arribas-Ayllon, M., Sarangi, S., and Clarke, A. 2011. Genetic Testing. Accounts of Autonomy, Responsibility and Blame. London: Routledge.
  • Atkinson, P., Parsons, E., and Featherstone, K. 2001. Professional Constructions of Family and Kinship in Medical Genetics, New Genetics and Society 20 (1): 5-24.
  • Boenink, M. 2011. Unambiguous Test Results or Individual Independence? The Role of clients and Families in Predictive BRCA-testing in the Netherlands Compared to the USA, Social Science and Medicine 72(11): 1793-1801.
  • Braun, B. 2007. Biopolitics and the Molecularization of Life, Cultural Geographies 4(1): 6-28.
  • Buchbinder, M. and Timmermans, S. 2011. Medical Technologies and the Dream of the Perfect Newborn, Medical Anthropology 30(1): 56-80.
  • Chadwick, R. F., Shickle, D., Ten Have, H. A. and Urban, W. 1999. The Ethics of Genetic Screening. Kluwer Academic Publishers.
  • Chańska, W. 2009. Nieszczęsny dar życia. Filozofia i etyka jakości życia w medycynie współczesnej. Wrocław: Wydawnictwo UW.
  • Clarke, A. E., Shim, J. K., Mamo, L., Fosket, J. R. and Fishman, J. R. 2003. Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine, American Sociological Review 2(68): 161-194.
  • Clarke, A. and Tiscehurst, Flo. 2006. Living with the genome. Ethical and Social Aspects of Human Genetics. New York: Palgrave McMillan.
  • Conrad, P. and Gabe, Jonathan (eds.). 1999. Sociological perspectives on the new genetics. Oxford: Blackwell Publishers.
  • Collins, H. M. and Evans, Robert. 2002. The Third Wave of Science Studies. Studies of Expertise and Experience. Social Studies of Science 32(2): 235-296.
  • De Zordo, S. 2012. Programming the Body, Planning Reproduction, Governing Life: the '(Ir-)rationality' of Family Planning and the Embodiment of Social Inequalities in Salvador da Bahia (Brazil), Anthropology and Medicine 19(2): 207-223.
  • Domaradzki, Jan. 2013. Homo geneticus jako zoon genetikon. Prawo do niewiedzy a obowiązek wiedzy w dobie ryzyka genetycznego, in: M. Synowiec-Piłat and A. Łaska-Formajster (ed.), Biologiczny wymiar życia populacyjnego i jego socjologiczne interpretacje. Łódź: Wydawnictwo Uniwersytetu Łódzkiego, pp. 15-34.
  • Douglas, M. 1990. Risk and Blame: Essays in Cultural Theory. London: Routledge.
  • Dubas-Ślemp, H., Tylec, A., Michałowska-Marmurowska, H. and Spychalska, K. 2012. Choroba Huntingtona zaburzeniem neurologicznym czy psychiatrycznym? Opis przypadku, Psychiatria Polska 46(5): 915-922.
  • Ettorre, E. 1999. Experts as 'Storytellers' in Reproductive Genetics: Exploring Key Issues, Sociology of Health and Illness 21(5): 539-559.
  • Evans, R. J. and Plows, A. J. 2007. Listening Without Prejudice? Re-discovering the Value of the Disinterested Citizen, Social Studies of Science 37(6): 827-853.
  • Falk, M. J., Dugan, R. B., O ' Riordan, M. A., Matthews, A. L., and Robin, N. H. 2003. Medical Geneticists' Duty to Warn At-risk Relatives for Genetic Disease, American Journal of Medical Genetics 120A(3): 374-380.
  • Featherstone, K., Atkinson, P., Bharadwaj, A., and Clarke, A. 2006. Risky Relations: Family, Kinship and the New Genetics. New York: Berg.
  • Finkler, K. 2001. The Kin of the Gene: the Medicalization of Family and Kinship in American Society." Current Anthropology 42(2): 235-263.
  • Foucault, M. 1997. Technologies of the Self, in: P. Rainbow (ed.), The Essential Works of Michel Foucault 1954-1984. New York: The New Press, pp. 223-251.
  • Frączek, Patrycja, Jabłońska, Magdalena and Pawlikowski, Jakub. 2013. Medyczne, etyczne, prawne i społeczne aspekty badań prenatalnych w Polsce. Medycyna Ogólna i Nauki o Zdrowiu 19(2): 103-109.
  • Gibbon, S. 2006. Nurturing Women and the BRCA Genes: Gender, Activism and the Paradox of Health Awareness Anthropology and Medicine 13(2): 157-171.
  • Glaser, B. and Strauss, A. L. 1967. Discovery of Grounded Theory: Strategies For Qualitative Research. Chicago: Aldine.
  • Hanoch, Y., Miron-Shatz, T. and Himmelstein, M. 2010. Genetic Testing and Risk Interpretation: How do Women Understand Lifetime Risk Results? Judgment and Decision Making 5(2): 116-123.
  • Hallowell, N. 1999. Doing the Right Thing: Genetic Risk and Responsibility, Sociology of Health and Illness 21(5): 597-621.
  • Hunt, L. M., Castañeda, H., and De Voogd, K. B. 2006. Do Notions of Risk Inform Patient Choice? Lessons From a Study of Prenatal Genetic Counseling, Medical Anthropology 25(3): 193-219.
  • Irwin, A. 2001. Constructing the Scientific Citizen: Science and Democracy in the Biosciences, Public Understanding of Science 10(1): 1-18.
  • Kapelańska-Pręgowska, J. 2011. Prawne i bioetyczne aspekty testów genetycznych. Kraków: Wolters Kluwer.
  • Kerr, A. 2004. Genetics and Society. A Sociology of Disease. London and New York: Routledge.
  • Kerr, A. and Cunningham-Burley, S. 1998. The New Genetics and Health: Mobilizing Lay Expertise, Public Understanding of Science 7(1): 41-60.
  • Kerr, A., Cunningham-Burley, S. and Amos, A. 1998. Drawing the Line: an Analysis of Lay People's Discussions about the new Genetics, Public Understanding of Science 7(2): 113-133.
  • Konrad, M. 2003. From Secrets of Life to the Life of Secrets: Tracing Genetic Knowledge as Genealogical Ethics in Biomedical Britain, Journal of the Royal Anthropological Institute 9(2): 339-358.
  • Lancy, D. 2008. The Anthropology of Childhood: Cherubs, Chattel, Changelings. Cambridge: Cambridge.
  • Lawton, J. 2003. Lay Experiences of Health and Illness: Past Research and Future Agendas, Sociology of Health and Illness 25: 23-40.
  • Lindsey, Sally and Vrijhoef, Hubertus JM. 2009. "Introduction-A sociological focus on expert patients:' Health Sociology Review 18(2): 139-144.
  • Lippman, A. 1991. Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing In-equities, American Journal of Law and Medicine 17(1-2): 15-50.
  • Lock, M. and Nguyen, Vinh-Kim. 2010. An Anthropology of Biomedicine: An Introduction. Oxford: Wiley-Blackwell.
  • Lupton, D. 1997. The Imperative of Health. Public Health and the Regulated Body. London: Sage Publications.
  • Mazur, Allan. 1978. Biological Explanation in Sociology, Sociological Quarterly 19(4): 604-613.
  • Nelkin, D. and Tancredi, L. 1989. Dangerous Diagnostics. The Social Power of Biological Information. New York: Basic Books.
  • Novas, C. 2006. The Political Economy of Hope: Patients' Organizations, Science and Biovalue, BioSocieties 1(3): 289-305
  • Novas, C. and Rose, N. 2000. Genetic Risk and the Birth of the Somatic Individual, Economy and Society 29(4): 485-513.
  • Parsons, Evelyn and Atkinson, Paul. 1992. "Lay constructions of genetic risk." Sociology of Health and Illness 14(4): 437-455
  • Parsons, E. P. and Clarke, A. J. 1993. Genetic Risk: Women's Understanding of Carrier Risks in Duchenne Muscular Dystrophy, Journal of Medical Genetics 30(7): 562-566.
  • Pawlikowski, J., Sak, J. and Marczewski, K. 2009. Problemy etyczne i prawne związane z działalnością biobanków, Diametros 19: 106-118.
  • Pawluch, D., Cain, R. and Gillett, J. 2000. Lay Constructions of HIV and Complementary Therapy Use, Social Science and Medicine 51(2): 251-264.
  • Piątkowski, W. and Skrzypek, M. 2012. The Social Nature of Health and Illness-Evolution of Research Approaches in Polish Classical Medical Sociology, Annals of Agricultural and Environmental Medicine 19(4): 821-835.
  • Prior, L. 2003. Belief, Knowledge and Expertise: the Emergence of the Lay Expert in Medical Sociology, Sociology of Health and Illness 25(3): 41-57.
  • Rapp, R. 2000. Testing Women, Testing the Fetus. The Social Impact of Amniocentesis in America. New York: Routledge.
  • Rapp, R., Heath, D. and Taussig, K-S. 2001. Genealogical Dis-ease: Where Hereditary Abnormality, Biomedical Explanation and Family Responsibility Meet, in: S. Franklin and S. McKinnon (ed.), Relative Values: Reconfiguring Kinship Studies. Durham and London: Durham University Press, pp.384-409.
  • Rhodes, R. 1998. Genetic Links, Family Ties, and Social Bonds: Rights and Responsibilities in the Face of Genetic Knowledge, Journal of Medicine and Philosophy 23(1): 10-33.
  • Rose, N. and Novas, C. 2004. Biological Citizenship, in: A. Ong and S. Collier (ed.), Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. Oxford: Blackwell, pp. 439-463.
  • Rose, Nikolas. 2007a. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton: Princeton University Press.
  • Rose, N. 2007b. Molecular Biopolitics, Somatic Ethics and the Spirit of Biocapital, Social Theory and Health 5(1): 3-29.
  • Rothman, B. K. 1993. The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood. New York/London: Norton Company
  • Sachs, L. 2004. The New Age of the Molecular Family: an Anthropological View on the Medicalisation of Kinship, Scandinavian Journal of Public Health 32(1): 24-29.
  • Savulescu, J. and Kahane, G. 2009. The Moral Obligation to Create Children with the best Chance of the Best Life, Bioethics 23(5): 274-290.
  • Shaw, Margery W. 1987. Testing for the Huntington Gene: a Right to Know, a Right Not to Know, or a Duty to Know, American Journal of Medical Genetics 26(2): 243-246.
  • Siemińska, M. J. 2010. Genetyczne związki, rodzinne powiązania i społeczne więzi: o naturze zależności w obliczu wiedzy genetycznej, in: W. Chańska and J. Hartman (ed.), Bioetyka w zawodzie lekarza. Warszawa: Wolters Kluwer, pp. 226-237.
  • Skrzypek, M. 2011. Perspektywa chorego w socjologii choroby przewlekłej. Ujęcia teoretyczne, ich ewolucja i recepcja. Lublin: Wyd. KUL.
  • Soniewicka, M. 2013. Zapobieganie chorobom przenoszonym genetycznie-problem szkody prokreacyjnej, Principia LVII-LVIII: 141-164.
  • Stempsey, W. E. 2006. The Geneticization of Diagnostics, Medicine, Health Care and Philosophy 9(2): 193-200.
  • 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: Cross-Cultural Studies in Health and Illness 25(2): 139-170.
  • Szczepański, J. 1969. Elementarne pojęcia socjologii. Warszawa: PWN.
  • Szczurkiweicz, T. 1969. Studia socjologiczne. Warszawa: PWN.
  • Takala, T. 1999. The Right to Genetic Ignorance Confirmed, Bioethics 13(3-4): 288-293.
  • Taussig, K-S., Rapp, R. and Heath, D. 2008. Flexible Eugenics: Technologies of the Self in the Age of Genetics, in: J. X. Inda (ed.), Anthropologies of Modernity: Foucault, Governmentality, and Life Politics. Oxford: Blackwell Publishing, pp. 194-212.
  • Tesh, S. N. 1996. Hidden Arguments: Political Ideology and Disease Prevention Policy. New Bruncwick: Rutgers University Press.
Typ dokumentu
Identyfikator YADDA

Zgłoszenie zostało wysłane

Zgłoszenie zostało wysłane

Musisz być zalogowany aby pisać komentarze.
JavaScript jest wyłączony w Twojej przeglądarce internetowej. Włącz go, a następnie odśwież stronę, aby móc w pełni z niej korzystać.