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The Moral, Social, and Commercial Imperatives of Genetic Testing and Screening pp 71–93Cite as

Genetic Testing and Human Genetic Databases

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

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. CrimTrac agency, About us, available at <http://www.crimtrac.gov.au/aboutus.htm>, cited 3 May 2004.

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  34. 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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  40. 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.

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  1. Applied Ethics and Human Rights Program of the School of Humanities, Queensland University of Technology, Brisbane, Australia

    Dr. Astrid H. Gesche Ph.D.

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  1. Dr. Astrid H. Gesche Ph.D.
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  1. Faculty of Business & Enterprise, Swinburne University of Technology, Melbourne, VIC, Australia

    Michela Betta

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Gesche, A.H. (2006). Genetic Testing and Human Genetic Databases. In: Betta, M. (eds) The Moral, Social, and Commercial Imperatives of Genetic Testing and Screening. International Library of Ethics, Law, and the New Medicine, vol 30. Springer, Dordrecht. https://doi.org/10.1007/978-1-4020-4619-3_4

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