Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age

Both public and private healthcare providers are starting to offer online health records services.

Through its HealthSpace website, the NHS currently intends to provide everyone in England with online access to a summary of their medical records, including information about their current and past health problems, medication and allergies.

Several commercial companies, mainly in the US, provide services that allow people to organise their personal health information, integrate health records from different providers, and share them with other people, including healthcare professionals.

These services allow more convenient and patient-centred control of health records. However, there is potential for misuse of stored information.

We conclude

Governments should set up accreditation schemes for online health record providers to improve transparency and standards on how personal information is stored and used. Providers of these services should seek accreditation from such schemes.

During the signing-up process, online health record providers should provide potential users with information about data security and legal rights.

Responsible bodies in the EU, such as the UK Information Commissioner’s Office, should apply European Union data protection legislation to online health records used by people in the EU.