Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

Perversity, profits and paradoxical effects: how the production, use and control of information creates ethical complexities in the context of end stage kidney disease care (1073)

Dominique E Martin 1 , Jordan Parsons 2
  1. Deakin University, Geelong, VIC, Australia
  2. University of Bristol, Bristol, United Kingdom

End stage kidney disease (ESKD) affects millions of people around the world, with many dying due to lack of access to kidney replacement therapies. The high cost of providing life sustaining treatment for ESKD in the form of dialysis or kidney transplantation imposes significant burdens on patients, their families and communities as well as governments. Efforts to address the public health challenges of ESKD depend upon collection of information via population surveillance, patient registries and economic analysis of healthcare systems that may be used to inform priority setting and resource allocation and to guide clinical decision-making at the individual and policy levels. In this paper we explore three examples to highlight the potential risks and benefits of the collection and use of information in specific contexts of ESKD care, and examine the ways in which data may foster ethical goals or, conversely, undermine them. First, we discuss how financial conflicts of interest may result in "cherry picking" of dialysis patients that disadvantages those with poorer health status. Second, we discuss clinician concerns that disclosure of information about expensive treatment modalities in low income countries may be harmful to patients and their families. Third, we consider whether access to care should be conditional upon participation in public health surveillance initiatives. We argue that greater attention to the ethical implications of production, use and control of information in efforts to address the global burdens of ESKD is urgently needed if the goals of such efforts are to be achieved.