Portugal

Language of privacy

In Portugal, technically, is more accurate to use the expression right to the reservation of the intimacy of private and family life instead of privacy.

The right to the reservation of the intimacy of private and family life includes three manifestations: the right to isolation, the right to anonymity and the right to informative self-determination

With close relations to the right to the reservation of the intimacy of private and family life, is the right to the free personality development.

Seminal works on the subject of privacy itself (chronological order):

  • Marques, José Augusto Sacadura Garcia (1988), Informática e vida privada, Lisboa, Sep. de “Bol. do Ministério da Justiça”(373);
  • Mota Pinto, Paulo (1993), O direito à reserva sobre a intimidade da vida privada, Boletim da Faculdade de Direito, LXIX (1993), p. 479-586;
  • Comissão Nacional de Protecção de Dados Pessoais Informatizados [org.] (1998),Direito à Vida Privada e Liberdade, Lisboa;
  • Moniz, Helena (2000), Segredo Médico, Revista Portuguesa de Ciência Criminal, 10, 2000, p. 629-642;
  • Mota Pinto, Paulo (2000), A protecção da vida privada e a Constituição, Boletim da Faculdade de Direito, LXXVI, p. 153-204;
  • Ascensão, Oliveira (2002), A reserva da intimidade da vida privada e familiar, Revista da Faculdade de Direito da Universidade de Lisboa, XLIII, 1, p. 9-25;
  • Moniz, Helena (2004), Privacy and intra-familiy communication of genetic information, Revista de Derecho y Genoma Humano, 21, Julio-Diciembre 2004, p. 103-124 (also in german version at..).

Eurobarometer

Relevant interests expressed in different contexts

Conselho Nacional de Ética para as Ciências da Vida - CNECV (National Council of Ethics for the Life Sciences)

Relevant work on privacy issues was made by Conselho Nacional de Ética para as Ciências da Vida - CNECV (National Council of Ethics for the Life Sciences), an independent body created in 1990 by Law no. 14/90 of the 9th of June for the purpose of “analyzing systematically the moral problems which arise out of scientific progress in the fields of biology, medicine or general health care”.

Many opinions were produced by the Conselho, with interest for this purpose of identification of privacy interests (available at www.cnecv.gov.pt):

  • a) Report-Opinion 16/CNECV/96 on “The Obligatoriness of AIDS Tests”;
  • b) Report-Opinion 23/CNECV/97 on “The Draft Bill concerning Medically Assisted Procreation”;
  • c) Opinion 31/CNECV/2000 “Document on the human genome”;
  • d) Opinion 32/CNECV/2000 on “Medical Confidentiality”;
  • e) Opinion 40/CNECV/01 on “The Ethical Implications on Genomics”;
  • f) Opinion 52/CNECV/07 on “The legal system for DNA profile databases”;

Considering these Opinions, we may identify the following privacy interests:

Privacy interests in own data

  • Interest in knowing
  • Interest in not knowing
  • Interest in determining whether one knows
  • Interest in determining circumstances of knowing
  • Interest in ‘owning data’
  • Interest in controlling (research) uses of my data
  • Concern about genetic discrimination
  • Interest in preventing public access
  • Interest in preventing health employer access
  • Interest in preventing unauthorised access
  • Interest in preventing family access
  • Interest in allowing family access

Privacy interests in other’s data

  • Interest in them knowing their own data
  • Interest in knowing their data
  • Interest in their decision to disclose to others
  • Interest in their data not being known to medical researchers
  • Interest in their data not being known to police
  • Interest in their data being known to police

Associação Portuguesa de Bioética (Portuguese Association for Bioethics)

In 2006 the Portuguese Association for Bioethics has published a report on ethics problems in genetic databases (Opinion n.º E/07/APB/06, available in http://www.apbioetica.org).

Specific legislation on the subject of genetic databases and/or biobanks

In Portugal, the protection of genetic privacy has been moulded in Law no. 12/2005, of January 26 (law about personal genetic information and information regarding health). Some provisions were already on the Data Protection Law (Law no. 67/98, of October 27) when it admits a constitution of medical databases including medical data and genetic data.

This law, which not only deals with the protection of personal genetic information, intends to regulate: the concept of information regarding health and of genetic information, the circulation of information and the intervention on a human genome in the health care system, but also with the rules for the sampling of and the conservation of biological products for genetic testing or research.

In the terms of number 1 of Article 6, “genetic information is the information regarding health which deals with the hereditary characteristics of a single person or various people, related amongst themselves or with common characteristics of this kind. From this definition is excluded the information taken from tests of consanguinuity, studies of zygotousness in twins, studies of genetic identification for criminal purposes, as well as the study of physical genetic mutations in cancer”.

Law number 12/2005, of January 26, also defines the concept of “genetic database”, considering it to be part of the category of “any record, computerised or not, which contains genetic information about a group of people or families” (Article 7, number 1), that “the genetic databases which contain family information and the genetic records which allow the identification of relatives should be maintained and supervised by a doctor specialised in genetics or, if this is not possible, by another doctor” (Article 7, number 3), and that “any individual may request and have access to the information regarding him/herself contained in the files with personal data, in accordance with the law”.

In the same legal document, the concept of bio banking, or “bank of biological products” is also defined, determining in number 1 of Article 19, that “for the purposes of this law, the “bank of biological products” is understood to be any repository of biological samples or of its by-products, with or without a set duration for its storage, whether it uses prospective sampling or previously sampled material, whether it was obtained as a component of the routine rendering of health care, whether in screening programs, whether for research and that it includes samples which may be identified, identifiable, anonymised or anonymous”.

It is also established that “the banks of biological products should only be constituted with the purpose of rendering health care, including the diagnosis and the prevention of diseases, or basic research or applied to health” (Article 19, number 3) and which “should always guarantee privacy and confidentiality, avoiding the storage of identified matter, controlling the access to the sampling of biological matter, limiting the number of people authorised to do so and guaranteeing its security regarding loss, alteration or destruction (Article 19, number 8).