[FYI] Legislation protecting personal health data

[Horns@t-online.de (Axel H. Horns)]

                    CORDIS RTD-NEWS/c European Communities, 1999. 

                    Record Control Number: 13496

                    Date: 1999-08-20

                    Category: General policy

                    General Information:

                    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. 

                    Data Source Provider: European Group on Ethics in
                    Science and New Technologies

                    Document Reference: Based on a press release from
                    the EGE, Helsinki, 30 July 1999.

                    Subject Index Codes: Policies; Information, Medi