9. Ethical Issues
This section of the class notes considers ethics, in the context of several topics of current interest.
9.1 Medical Informatics and Bioinformatics
It is interesting to compare the ISHTAR Medical Database Security Guidelines with the material usually found in books on computer security. These very pragmatic guidelines were designed for the administrators of hospital databases in European countries, and are based on real experiences with such databases, often of an unfortunate nature. Encryption is not even mentioned, but several standard software engineering practices are highlighted.
The paper The Multiple Bodies of the Medical Record, by Marc Berg and Geoff Bowker is a beautiful application of ANT to the work done by medical records in hospitals in the UK national health system (it is also another example of a paper with a bad pun in its title). We can summarize the topics of this paper by the following table:
|human body||human body|
|body politic||body politic|
A medical record contains at least the following major sections:
It is interesting to contrast the Berg & Bowker paper with the the Data Fusion for the Multi-media Medical Database project of the Fraunhofer Center, which takes an almost totally technology-based approach - the exception is some lip service to meeting its technical goals "in a way that reduces stress, uses the physician's time more effectively, and increases communication with the patient." It is difficult to see how the third goal can be met by imposing yet another layer of computer mediated interaction, and I would predict that this project will encounter (or has already encountered) major problems if its software is deployed in real situations.
Note added November 2000: In the year since I last taught this course, the URL for this project was changed to http://www.crcg.edu/projects/medvis/medviswww/mmmdb.html, and is no longer linked from the top level of the institution where it was performed; this is presumably because the project was not very successful.Although its journalistic style emphasizes some controversial assertions about statistical methods, the reports about the large number of recent failed medical studies in A Bayesian Critique of Statistics in Health, by Robert Matthews, are significant. Actor-network theory (and common sense) would suggest that large pharmaceutical companies are having a significant effect here, because of their huge economic interests in showing positive results.
9.2 Codes of Ethics
9.2 Theories of Ethics