Autonomy, confidentiality and privacy
Much ink has been spilled discussing the ramifications of genetic advances for individuals, communities and societyat large. As we have seen, a central concern has been the problem of regulating access to, and control of, the genetic information that has been produced as a result of rapid progress in the fields of genetic research and genetic testing. To date, discussion has rightlyfocused on the uses to which genetic test results should be put, and, indeed, on the logicallyprior question of whether genetic information should be sought at all in certain circumstances. Debate has, however, tended to polarise the issues under scrutiny, setting the individual against the state or other interested parties such as insurers or employers. Moreover, from the perspective of the individual, the interests that have been identified as being at stake have centred on the autonomyof persons and the 'right' that theyhave to control personal genetic information. While these are important starting points, it should be realised that the discourse has barelybegun on the appropriateness of social, ethical and legal responses to the challenges that are thrown up bysuch scientific advances.
We have examined the nature of the interests at issue to determine preciselywhich factors, values, perceived benefits and adverse consequences should be assessed when deciding how genetic information should be handled. At first sight, the most obvious interest focuses on knowing genetic information, and, on this basis, arguments for a 'right to know' are frequentlyfounded, particularlyin the context of individuals and their relatives with respect to their own genetic information. The argument in favour of a 'right not to know' genetic information, which mayequally protect personal and familial interests, also merits analysis. Only then can a proper assessment be made of the appropriateness of anyuse of the information in question. While it is possible to make a strong argument
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Publication information: Book title: Genetic Privacy: A Challenge to Medico-Legal Norms. Contributors: Graeme Laurie - Author. Publisher: Cambridge University Press. Place of publication: Cambridge, England. Publication year: 2002. Page number: 182.
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