Will patients have a “right to be forgotten”, that is, to have their personal health data deleted forever? Under what circumstances can it be exercised and what are the consequences? Can COVID-19 patients also be covered by this right?
A group of researchers from CINTESIS – Center for Health Technology and Services Research and from the Faculty of Medicine of the University of Porto (FMUP), say that “it is not possible to universalize the right to be forgotten without assessing the health consequences for individuals and populations”
To Sílvia Cunha and Miguel Ricou (coordinator of the study), the possibility of removing personal health data must be assessed “on a case-by-case basis, through a set of previously defined criteria”.
In the article published in Revista Iberoamericana de Bioética, the authors analyze the possible effects associated with the “right to be forgotten”, which consists of the right to request the definitive removal of health data, considered “sensitive data”.
On the one hand, the right to privacy and respect for the confidentiality of personal data is at stake; and on the other hand, the need to carry out scientific and epidemiological research to improve the quality, safety, and efficiency of health services, as well as to promote the public health is in danger.
This conflict between individual interests and public interests is evident, for example, in the case of infectious diseases, such as HIV / AIDS, hepatitis, and even COVID-19, particularly in the context of the current pandemic, but also in the case of oncological diseases, mental illness and genetic data.
“The elimination of health data, particularly in the case of a communicable disease, is quite complex. It will therefore be very difficult to accept, in these specific cases, the universal right to erase data ”, say the authors.
To FMUP/CINTESIS researchers, a “case-by-case assessment will always be the ideal solution” and “it should preferably involve professionals with different skills and experiences in the health field”.
In order to decide on the “deletion” of personal health data, the team defends the creation of “general procedures, based on multiple criteria”, such as “the disadvantages for the investigation, the consequences for the patient’s health and the results in the health of other patients or family members ”. A process that, they say, should involve institutions, health professionals, and patients themselves.