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An Empirical Ethics Analysis of Breast Cancer Screening in Australia

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An Empirical Ethics Analysis of Breast Cancer Screening in Australia An empirical ethics analysis of breast cancer screening in Australia Lisa Parker A thesis submitted in fulfilment of the requirements for the degree of DOCTOR OF PHILOSOPHY Centre for Values, Ethics and the Law in Medicine School of Public Health, Faculty of Medicine University of Sydney 2016 i Candidate’s declaration I, Lisa Parker, hereby declare that the work described in this thesis is my own. I am the principal researcher of all work contained in this thesis, including work conducted in association with my PhD supervisors and other co-authors. This thesis does not contain written or published materials prepared by others except where acknowledged within the text and has not been submitted to any other university or institution as a part or whole requirement for any higher degree. I, Lisa Parker, understand that if I am awarded a higher degree for my thesis entitled ‘An empirical ethics analysis of breast cancer screening in Australia’, being lodged for examination, the thesis will be lodged in the University Library and be available immediately for use. I agree that the University Librarian (or in the case of a department, the Head of Department) may supply a photocopy or microform of the thesis to an individual for research or study or to a library. Lisa Parker Date: 07.03.2016 ii Abstract Breast screening is a large and important public health program that attracts controversy and disagreement. While there are many supporters for breast screening, there are others, including people with expertise and experience in breast screening, who disagree with at least some of the common breast screening policies and practices. Disagreement persists despite a large evidence base around breast screening. I sought to examine how opinions were formed amongst people who have been influential in developing breast screening policy and practice in Australia, and the role of values in their reasoning. I used an empirical ethics approach, combining empirical study with theoretical analysis . For my empirical research I interviewed Australian “experts”: individuals with expertise and influence in breast screening, including participants from a range of professional roles and experience related to breast screening. I questioned these experts about their views on breast screening with a particular interest in determining how these views were formed. I found that participants draw on values as well as evidence when talking and reasoning about breast screening. The group expressed a range of interpretations and priority levels for each value. I explored several aspects of breast screening in depth to examine these findings in more detail, focusing in turn on the topics of overdiagnosis, communication with consumers, and socially embedded concepts in breast screening. In each of these subjects I found that experts’ disagreements were based, at least in part, upon differences in the way they understood and prioritised certain important values. Experts did not always reflect on the role of values in shaping their views on breast screening, and did not necessarily recognise differences in how any given value was conceptualised. I drew upon these findings to consider decision making in breast screening policy and practice and explore ways of managing values based conflict in iii breast screening. In the Discussion I suggest that there be explicit acknowledgement of the role of values in shaping views about breast screening, and that values should be openly discussed and debated. I provide practical guidance about formats that such discussions might take. I conclude that values play an important but often unrecognised role in shaping breast screening policy and practice, and propose that there be regular review of such values and the ways in which they relate to breast screening, in order to deliver breast screening in the most ethically sound manner. iv Table of Contents Candidate’s declaration ................................................................................................................ ii Abstract ............................................................................................................................................. iii Table of Contents .............................................................................................................................. v List of Tables and Boxes ............................................................................................................... ix List of special terms and abbreviations ................................................................................... x Contributions, publications, and presentations................................................................ xix Acknowledgements .................................................................................................................... xxii Preface and thesis overview.................................................................................................... xxv Organisation of thesis ......................................................................................................................... xxvi Chapter 1: A biomedical history of breast screening by mammography ................... 1 1.1 Chapter introduction ......................................................................................................................... 2 1.2 Historical background – the challenges of breast cancer .................................................... 2 1.3 The promise of early detection ...................................................................................................... 4 1.4 Screening by mammography - evidence of benefit from early trials ............................... 6 1.5 The introduction of organised breast cancer screening by mammography in Australia ...................................................................................................................................................... 11 1.6 Breast screening: the last 25 years ............................................................................................ 16 References .................................................................................................................................................. 20 Chapter 2: Social and ethical considerations in breast cancer screening ................ 28 2.1 Chapter Introduction....................................................................................................................... 29 Abstract ....................................................................................................................................................... 30 Introduction ............................................................................................................................................... 31 Social aspects of breast screening ..................................................................................................... 31 Social attitudes towards breasts and breast cancer ............................................................................. 31 Sociology of health and illness ....................................................................................................................... 33 Biomedical culture .............................................................................................................................................. 34 Commercial and institutional aspects of breast screening ................................................................ 36 The political nature of breast screening .................................................................................................... 37 Ethical issues in breast screening ...................................................................................................... 39 Maximising health benefits through breast screening ........................................................................ 40 Breast cancer mortality benefits .................................................................................................................. 41 Avoiding or minimising harms ...................................................................................................................... 46 Delivering more benefits than harms ......................................................................................................... 52 Delivering the most benefit possible within the resources available ........................................... 55 Respecting and Supporting Autonomy ...................................................................................................... 56 Honesty, transparency and procedural justice ....................................................................................... 59 Distributive justice ............................................................................................................................................. 62 Reciprocity ............................................................................................................................................................. 64 Solidarity ................................................................................................................................................................ 66 Conclusion .................................................................................................................................................. 69 References .................................................................................................................................................
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