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ItemThe Life of Human Rights: An Everyday Approach to Understanding Human Rights in an Australian Parliamentary Enquiry on the Involuntary Sterilisation of People with DisabilitiesHernandez Ruiz, Maria Paula ( 2022)This research questions how ‘human rights’ are used in a parliamentary inquiry on the coercive or involuntary sterilisation of people with disabilities in Australia. Throughout three chapters, the thesis breaks down ‘human rights’ as a concept and as a practical approach in development programming. Chapter two delves into the multiple understandings of rights in the development literature and incorporates contributions from legal anthropology and the field of the social studies of science and technology to understand human rights in the development context. Chapter three proposes an “ethnography in the archives” as a methodological design that pushes disciplinary boundaries to understand the value of documents and arguments in how different stakeholders inside and outside of the development field engage with issues such as the coercive sterilisation of people with disabilities. Finally, chapter four offers an analysis derived from 82 documents presented in the parliamentary inquiry in Australia. This chapter shows this thesis’s main argument: That human rights differ from what this research calls ‘everyday rights’, which are the claims articulated by people drawing upon their lived experiences rather than human rights treaties or arguments. This argument sheds light on how development practice often faces a gap between what the stated outcomes are in terms of Human Rights-Based Approaches and the practical realities of rights claims.
ItemEliciting societal preferences for non-health outcomes : A person trade-off study in the context of geneticsSheen, Daniel ( 2021)This thesis explores the willingness of Australians to trade-off health for the non-health benefits associated with a genomic test for a suspected genetic condition in a paediatric setting. This question is framed within an extra-welfarist approach to resource allocation in health policy that exclusively prioritizes health maximisation while systematically excluding non-health benefits. This practice is a value judgment which fails to account for the social costs and equity implications that excluding non-health benefits incurs. To test whether social preferences align with the health policy approach participants were placed in the role of a societal decision maker and asked to complete two iterative person trade-offs with four choices in each trade-off. A survey of 419 Australian participants, had participants trade-off families receiving the non-health benefits of a genomic test with adults receiving approximately one quality-adjusted life year (QALY) gain over four years for physical or mental health conditions. Results found that 78.9% of participants switched from their most preferred group when completing the physical health trading-off and 80.5% when completing the mental health trade-off. Using participants willingness to switch between groups as group sizes were adjusted a point of indifference was estimated. This gave a median estimated equivalence value of 1.54 genomic tests for each QALY gained, and a ratio of means estimated equivalence value of 1.29 genomic test for each physical health QALY and 1.37 genomic test for each mental health trade-off. Participants showed a clear willingness to trade direct health gains for non-health benefits under person trade-off conditions. This indicates a preference for the inclusion of non-health benefits in the assessment of health technologies to maximise social benefits and equity, in opposition to policy makers current utilitarian extra-welfarist approach of solely maximising QALY gains. Demonstrating a disconnect between policy makers preference and Australian’s preferences for maximising broader social welfare.