Protection of personal data of persons deceased by Covid-19

In a pandemic period, there are several rights and freedoms that, given the state of emergency in which we find ourselves, see their exercise limited. This limitation has been defended in some countries as necessary and even fundamental for its success in containing the disease. Consider the case of countries such as China, the Philippines, Singapore, India and Paraguay where tough measures have been implemented to limit citizens’ freedoms, leading UN human rights experts to urge countries to ensure that their responses to the pandemic are proportionate, necessary and non-discriminatory.

Although the focus of our attention must undoubtedly be the protection of citizens and the search for a cure for the disease, our obligation to care for the memory and rights of those who unfortunately died from this virus is no less important.

The General Data Protection Regulation is not, as a rule, applied to the rights of the deceased, with some exceptions, because although the data subject has died, this does not mean that, for example, all of their medical records become automatically public knowledge. These may contain information, such as hereditary diseases or genetic information, relevant to the family members who survive them.

Art. 9 (1) of the said regulation provides for the prohibition of “processing of genetic data, biometric data to uniquely identify a person, data relating to health or data relating to a person’s sexual life or sexual orientation”, with the exceptions provided for in paragraph 2 of the same article.

Portugal, as well as France, enshrined in their data protection legislation that the protection of personal data of the deceased will be exercised “by whomever the deceased person has designated for that purpose or, in their absence, by the respective heirs. Data subjects may also, under applicable legal terms, make it impossible to exercise the rights referred to in the preceding paragraph after their death.” Likewise stood Germany by allowing the right of exclusion up to five years after death, as well as Denmark which determined the right to privacy of information up to 10 years after the date of death. Italy and Spain have introduced similar rights, but without time limitation, while Ireland even allows protection in situations where there may be damage to the deceased family’s reputation.

In the pandemic scenario in which we find ourselves and in the search for the definition of action strategies, we have been witnessing a dispute for the right to access information about citizens infected by the new Covid-19.

Requests for access to information occur between local leaders and regional health authorities, national health authorities and the Ministry of Health, but also among the scientific community that, after the elaboration of an open letter addressed to the Government, saw the Prime Minister António Costa assure that “the DGS will start to release all anonymized data in order to allow free access by all investigation teams in the most diverse areas”.

It should be noted, however, that in all situations listed and not forgetting the special precautions necessary to ensure that the sharing of this information is in accordance with the rules imposed by Data Protection, we are always working with anonymised personal data!

On March 29, Correio da Manhã published an article entitled “The faces and names of victims of coronavirus in Portugal” in which it listed, with a photograph, the identification of 17 deceased victims of Covid-19. As the national situation evolved, the title of the article was changed to include the expression “Coronavirus continues to claim lives in Portugal.” And later “Coronavirus continues to sow tragedies. The faces and stories of the coronavirus fatalities. ” this time identifying 24 victims.

The protection of personal data is sometimes in conflict with the freedom of the press enshrined in the Press Law, but also in the GDPR itself and in the Data Protection Law, giving the exception to the rights mentioned, namely in the following cases:

  • If processing is necessary for reasons of major public interest, based on Union or Member State law, which must be proportionate to the objective pursued, respect the essence of the right to the protection of personal data and provide for appropriate and specific measures that safeguard the fundamental rights and interests of the data subject;
  • If treatment is necessary for reasons of public interest in the field of public health, such as protection against serious cross-border threats to health or to ensure a high level of quality and safety in healthcare and medicines or medical devices, on the basis of Union or Member State law which provides for appropriate and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.

The case of Correio da Manhã appears as a clear example of a violation of the Data Protection Law. The decision to publish an article for the sole purpose of publicizing the identification, using photography, of the personal data of deceased persons in Portugal who were victims of the coronavirus is blatantly irresponsible, not only because it is unknown how they have gained access to the especially sensitive information they share, in particular to the photographic record, as given the right to privacy and reserve of private and family life due to deceased people and their families that despite the dramatic situation they are in are left vulnerable by a publication that in no way defends public interest and health. In Portugal, the curiosity that moves some citizens, causing them to ask their representatives for information on the location of the infected people has been, well countered. Information on disease prevention measures, combating stigmatization through learning and sharing facts about Covid-19, raising awareness of the fact that viruses do not target specific racial or ethnic groups, as well as the mode of transmission of Covid-19, are examples of this communicational ‘battle’. The same care and attention are due to those who, victimized by the pandemic, are prevented from defending their rights.

The role of journalism in a crisis is essential and it must keep the public informed so that it can make decisions. In a pandemic moment like the one we are experiencing, this duty is even more important. As well as the duty of citizens to ensure compliance with the rule of law, the defence of the most vulnerable citizens, journalistic rigour and for their journalists to work with greater prudence and consideration.

Thank you for being on that side


Margarida Vieira Mendes