European Group on Ethics calls for legislation protecting personal health data
The European Group on Ethics (EGE) is calling for a directive on medical data protection and a European patient's charter. The Group, an independent consultative committee within the European Union, announced its position on the ethical aspects of the Information Society for the first time at a meeting in Helsinki, Finland, towards the end of July. The opinion will now be officially transmitted to the members of the European Commission, after their appointment, and to the European Parliament when it meets in September. The EGE believes that now is the time to put in place measures to protect personal health data. Consideration of the ethics of healthcare in society is necessary, it says, as there has been an explosion of the use of information and communications technologies in healthcare, marking the beginning of a wide range of uses of personal health data. Personal health data are the most sensitive data about an individual, says the group: 'They not only focus on an individual's medical history, but also behavioural patterns and possibly sexual life'. Because this data can be used for a number of purposes outside of the healthcare sector, (such as social security, containment of medical expenditure, statistics and research and insurance, amongst others) the EGE says citizens are entitled to legal protection from abuse of this data resource. Essentially, it says, it is a human right that personal data should be held confidential. The EGE will now suggest that a directive on medical data protection be established within the framework of the existing Data Protection Directive, to address the issues arising from the use of personal health data, and that a European Patient's Charter be adopted to cover the main principles of 'infoethics' in the healthcare sector.