Genetic testing and human genetic databases
Gesche, Astrid H. (2006) Genetic testing and human genetic databases. In Betta, Michela (Ed.) The moral, social, and commercial imperatives of genetic testing and screening : the Australian case. Springer, The Netherlands, Dordrecht, pp. 71-93.
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, that is, the National Criminal Investigation DNA Database (NCIDD), which is one of a web of databases overseen by the CrimTrac agency of Australia.
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