Gaps in existing privacy protection
8.30 The Inquiry has identified gaps in the existing framework for protecting the privacy of the individuals from whom genetic samples are taken or derived, including gaps that might be remedied if information privacy principles were to be applied to bodily samples.[32] Examples of these gaps are outlined below, with particular reference to the NPPs.8.31 …
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Read moreImplementing the reform
8.87 Although the drafters of the Privacy Act may not have had genetic samples in mind, the NPPs are drafted as high level principles capable of flexible interpretation in a myriad of circumstances. The NPPs do not prescribe exactly what an organisation must do to comply with them. Rather, they apply broad standards—for example, based …
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Read moreDeceased individuals
Extending the Privacy Act to deceased individuals7.84 DP 66 asked whether the Privacy Act adequately deals with issues that may arise in relation to the genetic samples and information of deceased individuals.[93] A threshold question concerns the extent to which it makes sense to protect the privacy of deceased individuals through the application of information …
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Read moreBalancing ethical considerations
6.17 The Inquiry is therefore centrally engaged in ethical issues. The challenge is to articulate, in an inclusive way, the reasons and arguments that could be used to resolve dilemmas and to provide justifications for answers to the questions raised by the Inquiry. The challenge is also to identify values or principles that reflect our …
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Read moreWhat are ethical considerations?
6.3 As IP 26 noted, ethics arean accumulation of values and principles that address questions of what is good or bad in human affairs. Ethics searches for reasons for acting or refraining from acting; for approving or not approving conduct; for believing or denying something about virtuous or vicious conduct or good or evil rules.[1]6.4 …
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Read moreGenetic information and ethics
6.12 As the Inquiry has progressed, the links suggested in IP 26 and DP 66 between ethics and genetic information have been confirmed and extended. In IP 26, it was suggested that these included the following aspects of genetic information:how it is obtained;what it reveals;about whom that information is revealed;the degrees of certainty and uncertainty …
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Read moreOpenness and accountability
Open, transparent and inclusive processes5.150 InDP 66, the Inquiry proposed that ‘As a general rule, meetings of the HGCA and its committees should be open to the public’.[153]In support of this proposal, the Inquiry wrote that:as a general rule, meetings of the HGCA and its sub-committees should be open to the public (including media representatives), …
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Read moreProposed functions
High-level advice on human genetics5.79 Many submissions emphasised the need for governments and other policy-makers to receive cutting-edge advice about a range of complex issues raised by the rapidly developing field of human genetics, which integrates a broad range of expertise, experiences and perspectives.5.80 The University of Tasmania’s Centre for Law and Genetics wrote that:It …
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Read moreIs genetic information truly ‘exceptional’?
Competing philosophies3.41 The literature about public policy making in respect of genetic information, especially in the United States, has tended to feature two polarised schools of thought. Those who favour ‘genetic exceptionalism’ view genetic information as uniquely powerful and posing special threats to privacy and discrimination that mandate dedicated and higher levels of legal protection. …
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Read moreALRC submission to the inquiry into exposure drafts of Australian privacy amendment legislation
Ms Christine McDonaldSecretary, Legislation CommitteeSenate Standing Committee on Finance and Public Administration 23 July 2010 Dear Ms McDonald Inquiry into exposure drafts of Australian privacy amendment legislation The Australian Law Reform Commission (ALRC) welcomes the release of the Australian Privacy Principles Exposure Draft and Companion Guide as a major plank in the implementation of the …
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