When is a breach of confidence not a breach of confidence? Patient confidentiality, transparency and accessibility of data processing for research purposes

摘要

The European Court of HumannRights in Strasbourg has recognizednthe fundamental importance of maintainingnconfidentiality of medicalnrecords:n‘Respecting the confidentiality ofnhealth data is a vital principle in thenlegal systems of all the contracting partiesnto the Convention. It is crucial notnonly to respect the sense of privacy of anpatient but also to preserve his or hernconfidence in the medical professionnand in the health services in general.’n(1990) 12 EHRR 36, para 49nThe right to confidentiality undernarticle 8 is not absolute, but is qualified.nIf a disclosure is made in accordancenwith the law, is proportionatenand is made in a legitimate interest itnwill not constitute a breach of articlen8. Public awareness of data issues hasnbeen affected by the advent of thenData Protection Act (DPA) 1998 andnthe Human Rights Act 1998 and thenmedia coverage of legal challenges tonthe invasion of a celebrity’s privacy. Anfalse impression is being created thatnwe enjoy stronger rights in relation tonour personal data than we actually do.nNowhere is this truer than in thenhealthcare context. For example, it isncommonly thought that a patientnowns their medical records (myth –nownership is vested in the doctor ornauthority that created them); that anpatient has the absolute right to accessntheir medical records (myth – therenare very limited rights of access undernthe DPA 1998, the Access to MedicalnReports Act 1988 and the commonnlaw); that a healthcare professionalncannot disclose information you havenshared with them without yournexpress consent (myth – in a wholenhost of situations the healthcare professionalncan, and in several situationsnmust disclose certain information withnor without your consent).