http://www.ncbi.nlm.nih.gov/pubmed/23494690

Hastings Cent Rep. 2013 Mar;43(2):2. doi: 10.1002/hast.146.

Information Ethics.

Kaebnick GE.

Abstract

The use of information raises a perplexing new set of questions in bioethics. One familiar subset of these has to do with the goal of improving medical practice by collecting information about it, in effect integrating practice and research. This topic was discussed in the January-February 2013 issue of the Report and in this issue is taken up again in Policy and Politics, where Michelle Meyer connects the issue to the evidence-based medicine movement. A somewhat less familiar set has to do with potentially dangerous information. In the lead article in this issue, David Resnik discusses the publication last year of two articles that described how researchers had developed new and more dangerous forms of H5N1, also known as bird flu, which has produced an extraordinary death rate when it has infected people but has not so far evolved into a form that can be easily transmitted from one person to another. Yet another set has to do with sharing clinical medical information using newly developed tools such as electronic health records. In an essay in this issue, Kyle Galbraith argues that these technologies also need to be usable for patients, but that "those who have the most to gain from increased access to their health information are often unlikely to be able to decipher that information and respond in a meaningful way."