About the disclosure of the identity of patients with suspected ebola: violation of the law and ethics

Texas health officials have just disclose the existence of a second case of contamination by ebola in the United States. So far, the name of the health professional in question was not disclosed, although it is a confirmed case of the disease. In the first case of ebola treatment in the United States, the name of the patient who died was released only a few days after the confirmation of the diagnosis – and according to CNN, it was the Government of Liberia, and not of the United States, who leaked it. In France, the name of the MSF nurse treated in Paris was not disclosed even after her cure. In Spain, the names of the contaminated nurse and her husband were released only after the confirmation of the diagnosis.

In Brazil, a suspected case of ebola reported in Cascavel (State of Paraná), last Thursday, led to the public display of  the photo, name and documents of the patient. In the case of a requester of refuge, there is violation of the Brasilian law (Law 9,474 from 1997, especially articles 20 and 23).

It is also possible that there is violation of the law of epidemiological surveillance  (Law 6,259 from 1995). So far, however, this blog did not get the information about who disclosed the name of the patient. According to the law, notification of the disease has secrecy, but the identification of the patient outside the health sanitary scope  may be permitted, exceptionally, in the case of “serious risk to the community according to the health authority and with prior knowledge of the patient orn the person responsible for him”. We don’t know whether there is this decision of the health authority, but nothing indicates that the episode fits the legal exception, since there is no outbreak of  ebola epidemic in Brazil, even less a confirmed case.

We emphasize, however, that the eventual confirmation of a case does not require the health authority to identify the patient. On the contrary, in an article already published in the blog, Fernando Verani (physician and researcher at the National School of Public Health) considers that: “a panic situation could harm the work of investigation of contacts, as possible suspected cases may not present themselves to health structures for fear of isolation”.

In the case of ebola, disease transmission characteristics (only through direct contact with body fluids of a symptomatic patient ) favor the containment of the virus. Health professionals are the population exposed to greater risk of contagion, and for this the most important response of the health care system is their preparation for dealing with the cases. People who have had contact with the patient should be visited by a surveillance service, which will examine them and, when appropriate, take the necessary measures. The authority only discloses the identity of  people when they understand that this diffusion ensures better protection of public health, which clearly is not the case.

In the already cited article, Sergio Rego (Coordinator of the Graduate Program in Bioethics, Applied Ethics and Collective Health) reports the unpreparedness of the press to deal with suspected ebola: “today, mass circulation national newspapers have released the name of the patient and, amazingly, its documentation”. The professor added: “how many people can avoid to seek assistance for fear of having their lives exposed by irresponsible newspapers and TVs ? The ethical reflection must substantiate decisions in all instances in a responsible manner so as not to generate any more trouble and panic “.

We underline the persistant reference to the patient as “the African”, added to the exposure of his photograph and his documents, resulting  in the exponential increase of manifestations of racism and xenophobia in the social networks. A public petition was addressed to the President of the Republic requesting the “closure of the borders” to Africans.

In press conferences related to the suspected case, federal health authorities were urged by journalists to restrict Brazilian migration policy, to “close the borders” and to intensify the “input control” of Africans. The Health Minister, Arthur Chioro, and the Secretary of Health Surveillance, Jarbas Barbosa, were tireless in the explanation of that prejudice, as well as that it is ethically unacceptable and harmful to public health: any white person from any country could have passed for one of the States where there is ebola epidemic. In addition, the measurement of temperature is a harmless control of bodies, because the disease is not symptomatic when it is incubated. The due answer to ebola is the existence of a public health system, universal access (to which people can use regardless of their economic situation), endowed with a disease notification system.

If it is true that the Brazilian surveillance system passed in this first test for ebola, it also became apparent the misunderstanding, by the media, of the importance of its role during health crises. Thus, this first suspected case of ebola has contributed greatly to the spread of racism and xenophobia in Brazil, in addition to reiterating the disrespect the privacy and the dignity of the human person that rages in the media of our country.

It was also highlighted a second serious risk, in addition to the threat of the virus: the epidemics that make way for human rights violations, amid the panic, which favors unfortunately practices present in Brazil, as the lynchings. The best response to ebola is responsibility, never panic.

Article published at Saúde Global (www.saudeglobal.org).

Sueli Dallari is Professor at the Faculty of Public Health of the University of São Paulo – USP

Fernando Aith is Professor at the Faculty of Medicine of the University of São Paulo – USP

Deisy Ventura is Professor at the Institute of International Relations of the University of São Paulo – USP