Health data privacy and confidentiality rights : crisis or redemption?

• Autor(a) principal: Lobato de Faria, Paula
• Data de Publicação: 2014
• Outros Autores: Cordeiro, Joao V.
• Tipo de documento: Artigo
• Idioma: eng
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: http://hdl.handle.net/10362/105711
• topic: Right to privacy; Right to confidentiality; Health data; Health data protection and security; Patient’s rights; European data protection law; Direito à vida privada; Direito à confidencialidade; Dados de saúde; Proteção e segurança de dados de saúde; Direitos dos doentes; Direito europeu da proteção de dados

ABSTRACT - Although widely analyzed by authors and theoretically valued by the public, the right to health data confidentiality seems to be more of an academic figure than a real protected right. This happens due to intrinsic problems with the practical enforcement of some patient’s rights, but is getting more notorious in contemporary society. This article describes the rights to health data privacy and confidentiality in their classical contours, focusing on areas of consensus and controversy and analyzing the recent trans-formations in society that are causing a crisis in these same rights. We agree that there are reasons to believe that there are no novel legal instruments in Health Law to redeem these rights, except for European Data Protection Law. Here, we briefly analyze the new European data protection draft regulation, which intends to bring reinforced tools on this domain. We conclude that the juridical aura that still embraces the right to medical and genetic data confidentiality in Health Law and Bioethics seems to no longer have a practical sense. However, despite this perception, the essential dimension of individual freedom relating to personal information and to the notion that the less is known about us the freer we all are is still very relevant and so Health Law needs to dedicate more attention to the transformations of privacy and confidentiality in the medical and genetic fields in order to maintain them protected and respected.