Essentially Whose? Genetic Testing and the Ownership of Genetic Information

  • Lyn Turney
Part of the International Library of Ethics, Law, and the New Medicine book series (LIME, volume 30)

In March 2003, following extensive public consultation, the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) produced their final report entitled: Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC-AHEC, 2003). The Commission made many recommendations according to the main theme encapsulated in the title that clearly preserve the right of individuals to ownership of their own genetic information. In doing so, the Commission endorsed the universal application of the broad ethical values of ‘‘protecting the integrity of the person, human dignity, autonomy and the individual’s right to consent’’1 to all forms of genetic testing, including paternity testing.

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

Notes

  1. 1.
    ALRC-AHEC, 2003. Essentially Yours: The Protection of Human Genetic Information in Australia. Canberra: Australian Law Reform Commission/Australian Health Ethics Committee, 861. Google Scholar
  2. 2.
    Pilnick, A. 2002. Genetics and Society: An Introduction. Buckingham and Philadelphia: Open University Press. Google Scholar
  3. 3.
    Senior, V., Martineau, T. M., and Peters, T. J. 1999. Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents’ responses to neonatal screening for familial hypercholesterolaemia. Social Science & Medicine 48 (12): 1857–1860. CrossRefGoogle Scholar
  4. 4.
    Willis, E. 2002. Public health and the ‘‘new’’ genetics: balancing individual and collective outcomes. Critical Public Health 12 (2): 139–151. CrossRefGoogle Scholar
  5. 5.
    Australian Centre for Emerging Technologies and Society. 2003. Swinburne National Technology and Society Monitor. Hawthorn: Swinburne University of Technology, available at <http://www.swin.edu.au/sbs/acets/monitor/2003MonitorFULL.pdf>.
  6. 6.
    Phenylketonuria (PKU) is an inherited genetic disorder that prevents normal breakdown of protein in food. Around 2% of people are carriers of the recessive gene for PKU. The DNA sample from the PKU test is also used to identify other inherited diseases at birth, such as cystic fibrosis (CF), so the samples collected are potentially a repository of valuable population health information. Phillips, G. 2003. Guthrie cards. Catalyst—ABC TV Science. 29 May 2003. Print version available at <http://www.abc.net.au/catalyst/stories/s867619.htm>, cited 11 August 2005.
  7. 7.
    Noble, T. 2004. Genetic company owns up to faults. The Age, Melbourne, 3. Google Scholar
  8. 8.
    Chadwick, R. 1999. The Icelandic database—do modern times need modern sagas? British Medical Journal 319 (7207): 441–444. PubMedGoogle Scholar
  9. 9.
    ALRC-AHEC, 2003, ibid., 651–855. Google Scholar
  10. 10.
    Pilnick, ibid., 85. Google Scholar
  11. 11.
    Turney, L. 2005a. The incidental discovery of nonpaternity through genetic carrier screening: an exploration of lay attitudes. Qualitative Health Research 15 (5): 620–634. CrossRefPubMedGoogle Scholar
  12. 12.
    Turney, L. 2004. Power, knowledge and the discourse of ‘‘paternity fraud.’’ International Journal of the Humanities 2(1): 223–231. Google Scholar
  13. 13.
    Turney, L. 2005b. Paternity Secrets: Why women don’t tell. Journal of Family Studies 11 (2): 227–245. Google Scholar
  14. 14.
    Wroe, D. 2002. The hazards of dealing with seeds of doubt. The Age, Melbourne, 3. Google Scholar
  15. 15.
    Anderlik, M. R. and Rothstein, M. A. 2002. DNA-based identity testing and the future of the family: a research agenda. American Journal of Law & Medicine 28 (2/3): 215–232. Google Scholar
  16. 16.
    Philips, ibid., 1. The police in Western Australia have already wrongfully accessed the database, an action that led to a Perth hospital destroying all previously collected samples and only storing them for a maximum 2 years. Philips, G. 2003, 1.Google Scholar

Copyright information

© Springer 2006

Authors and Affiliations

  • Lyn Turney
    • 1
  1. 1.Sociology and researcher for the Australian Centre for Emerging Technologies and SocietySwinburne University of TechnologyVICAustralia

Personalised recommendations