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Informational autonomy and the preservation of free choice in genetic testing: The Cyprus case

Laoutari, Angeliki 2008. Informational autonomy and the preservation of free choice in genetic testing: The Cyprus case. PhD Thesis, Cardiff University.

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Abstract

This thesis aims to explore informational autonomy by demonstrating the correlation between genetic testing and informational autonomy, focusing on the preservation of the free choice option with special reference to thalassemia in Cyprus. This exploration does not intend to deliver a groundbreaking and bullet-proof new concept of informational autonomy that should be used without exception in every application of genetic testing, but rather to constitute the bedrock for reinstating the Cyprus strategy on genetic testing for thalassemia trait: it is a specific case study. This thesis makes a case for protecting informational autonomy, the ability for people to make their own responsible decisions, and argues that Cyprus strategy on thalassemia - as the empirical work demonstrates - is an example where the option of free choice is limited. The Cyprus Thalassemia Programme is recognised as being unique in the world for its success in almost completely eliminating new cases of thalassemia within 15 years. Along with premarital testing, genetic screening is mandatory for a couple wishing to get married in a Christian Orthodox Church. In the case of premarital testing, the option for couples to know or not know if they are the thalassaemic trait carriers is not considered at all. The challenge for Cyprus in the 21st Century is to advance the existing control programme while respecting freedom. By introducing pre-natal diagnosis along with premarital screening, Cyprus succeeded in eliminating the number of births with thalassemia, but increasing the number of abortions at the same time. People in Cyprus must have the option to know or not know if they are thalassemia trait carriers and should not be "forced" to make a premarital testing. Informational autonomy is a right that Cypriots are allowed to have. Human genetic information is ultimately not about genes it is about people.

Item Type: Thesis (PhD)
Status: Unpublished
Schools: Biosciences
ISBN: 9781303186370
Date of First Compliant Deposit: 30 March 2016
Last Modified: 12 Dec 2014 13:39
URI: http://orca-mwe.cf.ac.uk/id/eprint/55817

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