Chapter I - Understanding the Legal Roots

Summary

Introduction – As indicated, the patient's right to data protection finds its roots in two areas of law: data protection law on the one hand and health law, on the other hand.

Data protection law – Data protection law, as known today, is rooted in the nineteenth century's conception of ‘privacy’. The advent of the letterpress printed yellow press had caused a change in society that needed to be echoed in law. Samuel Warren and Louis Brandeis were, in 1890, the first to describe a new right to fill the gap that had developed between law and society. Their conception of the right to privacy is generally considered the starting point for research on privacy and data protection. Following up on Anton Vedder's conclusion that, “[i]t is surprising how much of Warren and Brandeis’ original notion has been kept alive”, Warren and Brandeis’ analysis is chosen as the starting point also for our discussion. Nevertheless, the discussion narrows down quickly to the relevance of Warren and Brandeis’ notions for the protection of personal data concerning health.

Health law – A body of International, European and national regulations protects the patient. Individual patients’ rights are rooted in the reaffirmation of human rights in the context of health care. Since the 1970s, there has been a growing interest in individual patients’ rights in Europe. At the end of the 20th, beginning of the 21^st century, individual patients’ rights also started to appear in national legislations. However, different from data protection, a generally accepted and enforceable European framework for patients’ rights is today still non-existent. The European Cross-border Patients’ Rights Directive comes close to the idea of a general bill of rights, but its scope is rather limited. The Cross-border Patients’ Rights Directive is in this chapter discussed together with other instruments that a) mention the right to data protection and b) had a substantial impact on the enactments of patients’ rights in national bills of law.