In his article ‘The Ebola Clinical Trials: a precedent for research ethics in disasters’, Philippe Calain constructs a compelling case as to why and how experiences from the recent Ebola epidemic should be used to develop a framework for disaster research ethics. In particular, Calain proposes a useful model for assessing whether or not an unproven intervention could be suitable for human use in a disaster context, and makes a powerful argument against the separation of patient care from research goals. (...) In this commentary, I argue that the separation of patient care goals from research goals is also unhelpful in the context of other forms of participant disadvantage even when that disadvantage is less severe than an ongoing public health emergency. I contend that recognising that research in disadvantaged populations is an intervention that could and should aim to produce positive outcomes for participants, just as it should in disaster contexts, therefore seems a well-justified lesson that can be extrapolated from the experience of the Ebola epidemic. (shrink)

In her excellent and comprehensive article, Friesen argues that utilising personal responsibility in healthcare is problematic in several ways: it is difficult to ascribe responsibility to behaviour; there is a risk of prejudice and bias in deciding which behaviours a person should be held responsible for; it may be ineffective at reducing health costs. In this short commentary, I will elaborate the critique of personal responsibility in health but suggest one way in which it could be used ethically. In doing (...) so, I will introduce the concepts of reasonable risk and golden opportunity. I previously argued that it is both difficult to disentangle responsibility and that we risk prejudice and bias in singling out behaviours that are socially disapproved of.1 So I am sympathetic to Friesen’s concerns. I also discussed another way in which ascribing personal responsibility for health is problematic which Friesen does not discuss and which, in my view, is the most concerning and further supports her arguments. It represents a back door assault on liberalism and neutrality towards concepts of the good life. Even if one were to accurately and in an unbiased way divine the personal contribution to disease, the greatest problem would remain: those who voluntarily take on risk would be penalised. That is, such a system would be risk-averse. Those lives which avoided risk would be prioritised, while those who chose to take on risky activities in their conception of the good life would be penalised. Yet risk is necessary, both for the good life, and social progress. Columbus, Edmund Hilary, Florence Nightingale, Ernest Hemingway and countless monumental figures in human history took risks in order to achieve something great. Should we aim for a society of trembling, teetotalling health nuts? Surely that prospect is horrific. It is horrific because it elevates health …. (shrink)