Free access to medical information: A moral right?

In a recent CMAJ editorial,1 Bruce Squires echoes a sentiment expressed by Virginia Barbour and colleagues2 that society has a moral right to medical information. They tell a chilling tale of what they describe as the “deadly” consequences of practitioners in the field having access to incomplete information. They claim that the dissemination of science must be driven not by publishers “but rather by the needs of society.”

Squires states that “publicly funded researchers have a moral obligation to make the results of their research freely available to everyone,” citing initiatives of the Canadian Institutes of Health Research in support of open-access publication as a model. But is this truly a moral obligation? Certainly one could argue that publicly funded researchers should be accountable to the public. However, the argument that there is a moral obligation to make such information freely available is problematic when considered in this specific context, and a series of broader interrelated questions must then be answered.

How are the interests of distributive justice served if publicly funded research is made freely available, but not any other research? It has previously been argued that ethically information on all research involving human subjects should be made publicly available, regardless of study design or funding source.3

What are the obligations of researchers to research subjects with respect to the dissemination of knowledge, and should funding source influence such obligations? If the obligations of publicly versus privately funded researchers differ, do researchers have a duty to disclose these distinctions to their human research subjects? What are the obligations of research ethics governance bodies to human subjects regarding both the availablity of such information and the disclosure of the researchers' obligations?

An analysis of the harms and benefits of public access to the results of medical research along the lines described by Barbour and colleagues2 would suggests that if there is a moral obligation to disclose medical information, it should be irrespective of the design, phase, nature and source of funding of the study.