The gathering of user data by national Medical Association websites

Introduction: Medical informatics ethics is concerned with a range of issues such as confidentiality, privacy, security, informed consent, data sharing and doing no harm. Websites use analytics tools to gather data about visitors, or users. The purpose of this study is to examine national medical associations’ websites in order to assess the extent to which they gather and share user data, and their adherence to ethical principles when doing so.

Method: The websites of the 100 national medical associations listed as members of the World Medical Association (WMA) were investigated. Their analytics tools were identified by using a Firefox plugin, Ghostery, and further information about data usage and protection was obtained from the Ghostery database and from the analytics tools’ data privacy policies.

Results: Of the 100 associations, 80 websites could be accessed. Of these, 38 (47.5%) gathered user data, and only seven had any indication that user data were being gathered. Other ethical principles, such as consent, were even more frequently ignored. The most commonly used analytics tool was Google Analytics, used by 31 sites.

Discussion and Conclusion: The extent to which informed consent is being ignored, data are being shared with third parties and retained for an unknown amount of time, and potential harm to users by an open exposure of data is of concern. Recommendations are put forward so that national medical associations’ websites might follow practices that are in keeping with the principles of medical informatics ethics.