Skip to main content
SpringerLink
Log in

Social-science Perspectives on Bioethics: Predictive Genetic Testing (PGT) in Asia

  • Published:
Journal of Bioethical Inquiry Aims and scope Submit manuscript

Abstract

In this essay, I indicate how social-science approaches can throw light on predictive genetic testing (PGT) in various societal contexts. In the first section, I discuss definitions of various forms of PGT, and point out their inherent ambiguity and inappropriateness when taken out of an ideal–typical context. In section two, I argue further that an ethics approach proceeding from the point of view of the abstract individual in a given society should be supplemented by an approach that regards bioethics as inherently ambiguous, contested, changeable and context-dependent. In the last section, I place these bioethical discussions of PGT in the context of Asian communities. Here, a critical view of what constitutes a community and culture proves necessary to understand the role of bioethical debates and the empirical manifestations of PGT in Asian societies. A discussion of the concepts of family and kinship in relation to PGT indicates that any bioethical analysis has to take into account that bioethical values are not just reflections of a cultural community, but embody both bioethical ideals and prevalent political rhetoric which is exhibited, propagated and manipulated by individuals and collectives for a variety of purposes. I end by summarising the contributions that social science could make to the understanding of the bioethics of PGT.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Chadwick, R., Levitt, M., & Shickle, D. (Eds.) (1997). The right to know and the right not to know. Aldershot UK: Ashgate.

  2. Rapp, R. (1999). Testing women, testing the fetus: The social impact of amniocentesis in America. New York: Routledge.

    Google Scholar 

  3. Marteau, T., & Richards, M. (1996). The troubled helix. Social and psychological implications of the new human genetics. Cambridge: Cambridge University Press.

    Google Scholar 

  4. Franklin, S., & Ragoné, H. (Eds.) (1998). Reproducing reproduction: Kinship, power and technological innovation. Philadelphia: University of Pennsylvania Press.

  5. Conrad, P. J., & Gabe, J. (Eds.) (1999). Sociological perspectives on the new genetics. Oxford: Blackwell.

  6. Konrad, M. (2005). Narrating the new predictive genetics. Ethics, ethnography and science. Cambridge: Cambridge University Press.

    Google Scholar 

  7. Morioka, M. (2004). Cross-cultural approaches to the philosophy of life in the contemporary world: From bioethics to life studies. In M. Sleeboom (Ed.) Genomics in Asia,. London: Kegan Paul (Chapter 10).

    Google Scholar 

  8. Kimura, R. (1993). Asian perspectives: Experimentation on human subjects in Japan – bioethical perspectives in a cultural context. In Z. Bankowski, & R. J. Levine (Eds.) Ethics and research on human subjects. International guidelines (pp. 181–187). Geneva: The Council for International Organizations of Medical Sciences (CIOMS).

    Google Scholar 

  9. Döring, O. (Ed.) (1999). Chinese scientists and responsibility. Ethical issues of human genetics in Chinese and international contexts. Hamburg: Mitteilungen des Instituts für Asienkunde.

  10. Fan, R. (Ed.) (1999). Confucian bioethics. Dordrecht: Kluwer.

  11. Issues in Islamic Medical Ethics. Available online: http://www.islamiclearning.org/Bioethics.htm. Accessed 4/10/2007.

  12. Eubios Ethics Institute. Available online: http://www.eubios.info/. Accessed 4/10/2007.

  13. Haimes, E. (2002). What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations. Bioethics, 16(2), 89–113.

    Article  PubMed  Google Scholar 

  14. Carson, R. A., & Burns, C. R. (Eds.) (1997). Philosophy of medicine and bioethics: A twenty-year retrospective and critical appraisal. Dordrecht: Kluwer.

  15. Spallone, P., Wilkie, T., Ettorre, E., et al. (2000). Putting sociology on the bioethics map. In J. Eldridge, et al. (Ed.) For sociology. Legacies and prospects (pp. 191–206). Durham: Sociology Press.

    Google Scholar 

  16. Rabinow, P. (Ed.) (1997). Michel Foucault: Ethics, subjectivity and truth. London: Allen Lane.

  17. Weisz, G. (1992). Social science perspectives on medical ethics. Dordrecht: Kluwer.

    Google Scholar 

  18. Nowotny, H., Scott, P., & Gibbons, M. (Eds.) (2001). Re-thinking science. Knowledge and the public in an age of uncertainty. Oxford: Polity.

  19. Lash, S. (1996). Introduction to the ethics and difference debate. Theory, Culture and Society, 13, 75–78.

    Article  Google Scholar 

  20. Sleeboom, M. (2004). Socio-genetic marginalization in Asia. A plea for a comparative approach to the relationship between genomics, governance, and social-genetic identity. In G. Árnason, S. Salvör Nordal, & V. Árnason (Eds.) Blood and data. Ethical, legal and social aspects of human genetic databases (pp. 39–44). Reykjavík: University of Iceland Press.

    Google Scholar 

  21. Simpson, B. (2004). What might an anthropology of contemporary bioethics look like: Some reflections on the development of bioethics in Sri Lanka. In Simpson B (Ed.), Between macro-ethics and micro-realities: What might an anthropology of bioethics look like? (pp. 5–20). London: Wellcome, Available online: http://www.wellcome.ac.uk/assets/wtx022952.pdf. Accessed 4/10/2004.

  22. Mao, X., & Wertz, D. (1997). China’s genetics services provider’s attitudes towards several ethical issues: A cross-cultural survey. Clinical Genetics, 52, 100–109.

    Article  PubMed  CAS  Google Scholar 

  23. Mao, X. (1998). Chinese geneticists’ view of ethical issues in genetic testing and screening: Evidence for eugenics in China. American Journal of Human Genetics, 63, 688–695.

    Article  PubMed  CAS  Google Scholar 

  24. Fujiki, N. (2004). Bioethics and medical genetics in Japan. In M. Sleeboom (Ed.) Genomics in asia (pp. 225–253). London: Kegan Paul.

    Google Scholar 

  25. Unnithan, M. (Ed.) (2006). Reproductive agency, medicine and the state. New York & Oxford: Berghahn Books.

  26. Chee, H. L., & Chan, C. K. (1984). Designer genes: I.Q., ideology & biology. Selangor, Malaysia: Institute for Social Analysis.

    Google Scholar 

  27. Harper, P. S. (1988). Genetic counseling in Mendelian disorders. In P. S. Harper (Ed.) Practical genetic counseling (pp. 18–41). London: Wright.

    Google Scholar 

  28. Lee, S. (2003). Racial profiling of DNA samples: Will it affect scientific knowledge about human genetic variation? In M. Knoppers (Ed.) Populations and genetics: Legal and socio-ethical perspectives (pp. 231–244). Leiden/Boston: Martinus Nijhoff.

    Google Scholar 

  29. Prainsack, B., & Siegal, G. (2006). The rise of genetic couplehood? A comparative view of premarital genetic testing. Biosocieties, 1, 17–36.

    Article  Google Scholar 

  30. Brandt-Rauf, S., Raveis, V., Drummond, N., & Rothman, S. (2006). Ashkenazi Jews and breast cancer: The consequences of linking ethnic identity to genetic disease. American Journal of Public Health, 96(11), 1979–1988.

    Article  PubMed  Google Scholar 

  31. World Health Organisation (1998). Proposed international guidelines on ethical issues in medical genetics and genetics services. WHO/HGN/GL/ETH/98.1, Section 6.

  32. Hennekens, C. H., & Buring, S. M. (1987). Epidemiology in medicine pp. 327–347. Boston, Toronto: Little, Brown.

    Google Scholar 

  33. Lam, S. T., & Pang, C. P. (Eds.) (1996). Neonatal and perinatal screening: The Asian Pacific perspectives. Hong Kong: The Chinese University of Hong Kong.

  34. Hjelm, M. (1996). Ethics of neonatal screening. In S. T. Lam, & C. P. Pang (Eds.) Neonatal and perinatal screening: The Asian Pacific perspectives (pp. 53–55). Hong Kong: The Chinese University of Hong Kong.

    Google Scholar 

  35. Marteau, T. M., & Johnston, M. (1986). Determinants of beliefs about illness: A study of parents of children with diabetes, asthma, epilepsy, and no chronic illness. Journal of Psychosomatic Research, 30, 673–683.

    Article  PubMed  CAS  Google Scholar 

  36. Henneman, L., Bramsden, I., Van Os, T., et al. (2001). Attitudes towards reproductive issues and carrier testing among adult patients and parents of children with cystic fibrosis (CF). Prenatal Diagnosis, 21, 1–9.

    Article  PubMed  CAS  Google Scholar 

  37. Nie, J. B. (2005). Behind the silence. Chinese voices on abortion. Lanham & Oxford: Rowman & Littlefield.

    Google Scholar 

  38. Scharping, T. (2003). Birth control in China 1949–2000. Population policy and demographic development. London, New York: Routlege Curzon.

    Google Scholar 

  39. Launis, V. (2004). Genetic and non-genetic medical information: Is there a moral difference in the context of insurance? In P. Glasner (Ed.) Reconfiguring nature. Issues and debates in the new genetics (pp. 185–202). Aldershot UK: Ashgate.

    Google Scholar 

  40. Lock, M. (2005). Eclipse of the gene and the return of divination. Current Anthropology, 46(Suppl), 47–71.

    Article  Google Scholar 

  41. Clarke, A., & Parsons, E. (Eds.) (1997). Culture, kinship and genes. Towards cross-cultural genetics. London: MacMillan.

  42. Baumann, G. (2002). Contesting culture. Discourses of identity in multi-ethnic London. Cambridge: Cambridge Studies in Social and Cultural Anthropology.

    Google Scholar 

  43. Lee, S. (2003). Racial profiling of DNA samples: Will it affect scientific knowledge about human genetic variation? In M. Knoppers (Ed.) Populations and genetics: Legal and socio-ethical perspectives (pp. 231–44). Leiden/Boston: Martinus Nijhoff.

    Google Scholar 

  44. Taussig, K., Rapp, R., & Heath, D. (2003). Flexible eugenics: Technologies of the self in the age of genetics. In A. Goodman, D. Heath, & S. Lindee (Eds.) Genetic nature/culture (pp. 58–76). Berkeley: University of California Press.

    Google Scholar 

  45. Sleeboom, M. (2004). Academic nations in China and Japan: Framed by concepts of nature, culture and the universal. London & New York: RoutledgeCurzon.

    Google Scholar 

  46. Dikötter, F. (Ed.) (1997). The construction of racial identities in China and Japan. Historical and contemporary perspectives. London: C. Hurst.

  47. Wade, P. (2002). Race, nature and culture. An anthropological perspective. London, Sterling, Virginia: Pluto.

    Google Scholar 

  48. Keown, D. (1995). Buddhism and bioethics. New York: St. Martin’s.

    Google Scholar 

  49. Sleeboom, M. (2004). Genomics in Asia: A clash of bioethical interests? London: Kegan Paul.

    Google Scholar 

  50. Novas, C., & Rose, N. (2000). Genetic risk and the birth of the somatic individual. Economy and Society, 29(4), 485–513.

    Article  Google Scholar 

  51. Scharping, T. (2003). Birth control in China 1949–2000. Population policy and demographic development. London, New York: RoutlegeCurzon.

    Google Scholar 

  52. Strathern, M. (1992). Reproducing the future: Essays on anthropology, kinship and the new reproductive technologies. Manchester: Manchester University Press.

    Google Scholar 

  53. Edwards, J. (2000). Born and bred: Idioms of kinship and new reproductive technologies in England. Oxford: Oxford University Press.

    Google Scholar 

  54. Franklin, S. (2005). Stem cells R Us: Emergent life forms and the global biological. In A. Ong, & S. Collier (Eds.) Global assemblages: Technology, politics and ethics as anthropological problems (pp. 59–78). New York and London: Blackwell.

    Google Scholar 

  55. Richards, M. (1997). It runs in the family: Lay knowledge about inheritance. In A. Clarke, & A. Parsons (Eds.) Culture, kinship and genes. Towards cross-cultural genetics (pp. 175–194). London: MacMillan.

    Google Scholar 

  56. Modell, B. (1997). Kinship and medical genetics: A clinician’s perspective. In A. Clarke, & A. Parsons (Eds.) Culture, kinship and genes. Towards cross-cultural genetics (pp. 27–39). London: MacMillan.

    Google Scholar 

  57. Bittles, A. H. (2002). Endogamy, consanguinity and community genetics. Journal of Genetics, 81, 91–8.

    Article  PubMed  CAS  Google Scholar 

  58. Sullivan, S., Wang, W., Lavely, W., & Bittles, A. H. (2003). Genetic epidemiology of intellectual disability in PR China, Centre for Human Genetics. Available online: http://www.chg.ecu.edu.au/events/ICG2003_CDS.pdf. Accessed 4/10/2007.

  59. Song, H. G. (2002). Yuanzhumin ganran aisi bilu gao yu pingdiren [The proportion of AIDS infected aborigines higher than that of the inhabitants of the plains] 4 June 2002, Lianhebao 20.

  60. Lee, Y. C. (1999). 13 July 1999, Taipei Shibao.

  61. Ge, Y. Q. (2002). 19 March 2002, Lianhebao 18.

  62. Liu, H. E., & Tai, T. H. (forthcoming in 2008). Public trust, commercialization, and benefit sharing: Towards a trustworthy biobank in Taiwan. In M. Sleeboom-Faulkner (Ed.), Human genetic biobanks in asia: Politics of trust and scientific advancement. London & New York: Kegan Paul.

Download references

Author information

Authors and Affiliations

  1. Department of Anthropology, University of Sussex, Falmer, nr Brighton, BN1 9SN, UK

    Margaret Sleeboom-Faulkner

Authors
  1. Margaret Sleeboom-Faulkner
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Margaret Sleeboom-Faulkner.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Sleeboom-Faulkner, M. Social-science Perspectives on Bioethics: Predictive Genetic Testing (PGT) in Asia. Bioethical Inquiry 4, 197–206 (2007). https://doi.org/10.1007/s11673-007-9064-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11673-007-9064-3

Keywords

Search

Navigation