When consent gets in the way

"When consent gets in the way" is the purposefully provocative title of the article (alas, freely open to the public for only 1 month) by Patrick Taylor in which he questions the current dogma about the relationship between consent, privacy, ethical behavior and the public good. Although I was among the early promoters of a strong model of patient personal control of their healthcare data and healthcare decision-making, I found several of Taylor's points compelling. Notably, that "it is questionable whether consent-for-everything will promote privacy and public trust" and "There is more to ethical decision-making than asking whether decisions are made autonomously. Do they take into account virtues, moral values and human narratives with less impoverished conceptions of human freedom? Are the choices good, and do they respect ethical obligations to others?" These points are at the heart of current trends in increasing the "liquidity of patient data" and are certainly central to the business plans of several large companies. How we respond to these assertions as a individuals and a society will be telling. Not only for our research policies and infrastructure but for our conception of healthcare.

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