The price of autonomy

Baum and Vaidya have issued a challenge to health policy makers and ethicists to survey popular opinion to determine the value placed on autonomy in the war against cancer. ¹ They suggest using scientifically valid, evidence‐based methodologies, perhaps using accepted population polling techniques or the focus group method, utilising a hypothetical breast cancer trial scenario.

In their paper they contrast the lack of consent requirement that pervades people’s participation in day‐to‐day activities with the rigorously controlled consent procedures required of those engaging in the provision of evidence to guide shared decision making in health matters.

Frequent illustrations in everyday affairs show that the public offer opinions and arrive at judgements based more on feelings than on reason. Poor perception of risk and probability is a factor. Even the former Health Minister, Frank Dobson, was prone to offering simplistic solutions to difficult problems ² by this method, thereby appealing to public fears and emotions rather than setting an example of the need to apply hard‐headed yardsticks of cost‐effectiveness to achieve distributive justice. A further example was his decision to arrange a mass vaccination programme for meningitis C to save an estimated 150 lives a year at a cost of undisclosed millions, which also raised anxiety levels. This decision was wisely contrasted by Jeremy Laurance in The Independent of 22 July 1999 with another much less appealing news item: the trials of an inexpensive drug, spironolactone, known for 40 years, which showed it as an effective treatment for heart failure with enormous potential for saving a large number of lives at low cost.

This leads me to suggest that such a survey could be particularly instructive if the methodology allowed for the question to be put to either randomly selected cohorts, or to the same cohort sequentially, to determine the difference in attitude between those with ‘average’ knowledge of the issues and a group who had been provided with background material and educated about the problems.

It is time the ethicists’ and lay‐leaders’ tendency to protect the silent, unaware majority is challenged, as is the silent majority’s insensibility to the debt they (and non‐participating physicians) owe to past participants and trialists.