A Contextual Approach for Ethical Analysis in Clinical Genetics

Madelyn Peterson (2008-12). A Contextual Approach for Ethical Analysis in Clinical Genetics PhD Thesis, School of History, Philosophy, Religion & Classics, The University of Queensland.

Document type: Thesis
Collection: UQ Theses Collection (MPhil and PhD)
 
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Author(s) Madelyn Peterson
Thesis Title A Contextual Approach for Ethical Analysis in Clinical Genetics
School, Centre or Institute School of History, Philosophy, Religion & Classics
Institution The University of Queensland
Publication date 2008-12
Thesis type PhD Thesis
Supervisor(s) Associate Professor William Grey
Associate Professor Malcolm Parker
Total pages 190
Total colour pages 33
Total black and white pages 157
Subjects 11 Medical and Health Sciences
Abstract/Summary Genetic medicine is an emerging area of healthcare which constantly raises novel ethical challenges in the clinical realm due to its capacity to reveal information that has deeply personal meaning. Genetic tests can reveal more than is strictly essential for immediate medical care because they can diagnose conditions that cannot be cured, treated or effectively managed. The diagnosis of a genetic condition in one individual can have repercussions throughout an extended family, and genetic knowledge has created innovative, technologically driven, reproductive options. For clients of genetic counselling, moral choice does not readily result from uncluttered logic or easy personal preference, nor does it involve the application of sterile principles and laws, but is a much richer process involving personal history and culture, as well as reflection upon personal values, current resources and projected life goals. For these reasons, I question the validity of the exclusive use of a narrow version of Principlism, as it is commonly operationalised, for the medical sub-specialty of clinical genetics. Its heavy emphasis on individual autonomy, which has become synonymous with clinical medicine, does not take into account the fact that most genetic tests have little or no immediate clinical utility, or that genetic medicine is primarily about the way in which genetic conditions pass through families, and management of recurrence risks by choice of reproductive options. Therefore, the aim of this dissertation is to develop and explore a broader contextual moral framework, which is better suited to deliberation about complex ethical dilemmas in clinical genetics, than the current dominant approach which tends to follow a restrictive and non-inclusive application of Principlism. To achieve this aim, I have started with a review of relevant history and socio-political forces that have shaped the current status of the genetic medicine, and examined the evolution of current attitudes that underpin recognition, analysis and management of the ethical challenges in genetic medicine. I have analysed the manner in which Principlism and other normative theories are employed by bioethicists and clinicians in response to ethical dilemmas, and presented an alternative approach which employs a broader contextual ethical framework. I have devised an approach which attends to the importance of both current social opinion, and the tradition of evidence-based medicine, with reference to selected traditions in philosophical analysis. vi In conclusion, I advocate attention to concrete circumstances, which includes recognition of historical development, which has shaped current medical and wider social values, beliefs, norms and attitudes political context, including critical analysis of relevant political motivations social context, particularly situational power structures, trust relationships and relational obligations personal values, resources and experiences of the stakeholder(s) the range of realistically available options for the stakeholder(s) the impact of economic limits, which might be institutional and / or personal And, to achieve this objective of building a ‘thick’ ethical discourse, I propose a series of questions, which can be readily utilised by genetic and non-genetic health professionals as well as other members of society to work towards resolutions that represent a balance of fairness, economic responsibility with scarce resources, and socially acceptability. This approach appropriately attends to the relational and communicative aspects of moral dilemmas in clinical genetics, and is likely to yield more meaningful (and less likely paternalistic) conclusions, which would be of greater value to our morally pluralist society.
Keyword(s) medical ethics
contextual ethics
genetic counselling
feminist ethics
narrative ethics
paternalism,
Additional Notes Page 11 to be printed in colour Pages 180 and 181 to be printed in landscape format
 
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