Download The Governance of Genetic Information: Who Decides? by Heather Widdows, Caroline Mullen PDF

By Heather Widdows, Caroline Mullen

This quantity maps the components of moral predicament within the debate concerning the governance of genetic details, and indicates replacement moral frameworks and types of rules with the intention to tell its restructuring. Genetic governance is on the center of scientific and medical advancements, and is hooked up to worldwide exploitation, problems with commodification, commercialisation and possession, the options of estate and highbrow estate and matters approximately person and communal identification. hence the choices which are made within the following couple of years approximately acceptable versions of genetic governance can have knock-on results for different components of governance. in brief the ultimate resolution to 'Who Decides?' within the context of genetic governance will essentially form the moral constructs of people and their networks and relationships within the public sphere.

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In section 68 an ‘accessible record’ is defined as a health record, an educational record, or an accessible public record. The latter two are, in turn, clarified at Schedules 11 and 12 to DPA98, whilst ‘health record’ is defined as ‘any record which (a) consists of information relating to the physical or mental health or condition of an individual, and (b) has been made by or on behalf of a health professional in connection with the care of that individual’. 6 DPA98, Part I, section 1. This formulation of personal data is closely based upon that found in Directive 95/46/EC where ‘ “personal data” shall mean any information relating to an identified or identifiable natural person (“data subject”)’.

17 DNA and genes are viewed as containing quantities of information in the mathematical sense. 18 Genetic information, in this sense, is not genetic information about anything at all (and so cannot count as personal information for data protection purposes). Although the mathematical notion of genetic information has a place in biology, there are other notions of genetic information in play. For example, linguistic and communicative metaphors are extremely common in talk of the intracellular molecular activity of DNA.

Tom keeps the severed finger in a jar of formalin in his bedroom. He possesses human tissue, and the tissue contains genetic information, including, in principle, personal information about Tom. Simply possessing tissue is not enough to bring in the duties and responsibilities specified in DPA98. The tissue sample must either be subject to automated processing, or – and this is more relevant for our purposes – must be part of a ‘relevant filing system’. Vast numbers of tissue samples are stored, filed and archived 4 Indeed, in the guidance notes to HTA04 we are told: ‘The purpose of the Act is to provide a consistent legislative framework for issues relating to whole body donation and the taking, storage and use of human organs and tissue.

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