Genetic databases would not exist without the input from donors. Their samples and their associated information are the foundation of their existence. Genetic databases contain very personal, sensitive information and, if misused, could lead to any number of potential harms for the donor. Consequently, the operation and use of genetic databases should meet the highest ethical standards backed up by effective regulations and legislation. The aim of this chapter is to first describe genetic databases and their function before turning to two of the most controversial ethical issues that surround genetic databases, namely privacy and informed consent, and describe how the Australian Government has so far responded to these challenges. It will close by turning to an explicit example, the National Criminal Investigation DNA Database (NCIDD), which is one of a web of databases overseen by the CrimTrac1 agency of Australia.

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Notes

  1. 1.
    CrimTrac agency, About us, available at <http://www.crimtrac.gov.au/aboutus.htm>, cited 3 May 2004.
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    For example, genetic patient information and karyotypes are kept for 3 years, microscope slides for 5 years; DNA extracts for molecular genetics minimum 1 month (but can be retained at the laboratory’s discretion); bone marrow slides and reports and frozen section tissue samples for 20 years. National Pathology Accreditation Advisory Council, 2002. Guidelines for the Retention of Laboratory Records and Diagnostic Material. Canberra: Department of Health and Ageing, available at <http://www.health.gov.au/npaac/pdf/ retentionlab.pdf>, cited 2 May 2004. How many are stored in pathology laboratories? No figures are available for Australia, but Barlow-Stewart (2001) reports that in 1999 US pathology archives held 282 million genetic samples and information about these samples.
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    An oft-cited case is the Moore Versus Regents of the University of California Case, where Moore sued the University of California, which patented a cell line derived from his tissue sample. In this case, the Supreme Court of California found that Moore did not have a property right over his tissue, only a right to be informed about what the researchers intended to do with his tissue. Cited in Australian Law Reform Commission, 2004. Gene patenting and human health. Discussion Paper 68, section 3.65. Canberra: SOS Printing Group.Google Scholar
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    In February 2001, the Attorney-General and the Minister for Health and Aged Care asked the ALRC and the AHEC to jointly inquire into primarily four areas of human genetic information: the protection of privacy of genetic samples and genetic information; the prevention of unfair discrimination from the use of genetic samples and genetic information; the balance of different ethical considerations across a number of different context; and the possibility that changes to the current regulatory framework may be required (ALRC 96, ibid., Terms of Reference; also Opeskin, B. 2002. Ten signposts to better law reform in relation to human genetic information. Conference paper. Einshac and the Istituto di Psicolgia Conference, Rome, 21–22 March, available at <http://www.alrc.gov.au/events/ speeches/BRO/20020322.htm>, cited 8 July 2004.
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    The NPPs were compiled for general application across all private sector organizations. While NPP6 and NPP10 make reference to health information, the principles are not intended to be specific to genetics. Consequently, they do not provide specific guidance on privacy issues related to genetic testing and genetic databases. In addition, any reference to genetic information would have been premature, given that the major ALRC/NHMRC inquiry into the protection of human genetic information was still underway.Google Scholar
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Copyright information

© Springer 2006

Authors and Affiliations

  • Astrid H. Gesche
    • 1
  1. 1.Applied Ethics and Human Rights Program of the School of HumanitiesQueensland University of TechnologyAustralia

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