Predictive Medicine in the Context of the COVID-19 Pandemic: Ethical-Legal Aspects of Informed Consent in the Protection of Genetic Data Processing by Healthcare Companies

Abstract

The article addresses the growing use of predictive, genetics-based medicine in the context of the COVID-19 pandemic and discusses how informed consent can be improved in safeguarding privacy, respecting autonomy, and protecting patients' genetic data. The relevance of this research lies in the sensitivity of genetic data and its increasing use in private healthcare and exploration by laboratories and diagnostic companies, especially during the COVID-19 pandemic. Understanding this topic is essential for the development of ethical-legal frameworks capable of reconciling medical innovation with patients' personality rights, such as privacy, autonomy, and data protection. It is important to consider that the collection, primary and secondary processing of genetic data, and predictive diagnostics carried out by companies pose some risks to clients, such as: a) the leakage (whether accidental or not) of sensitive data (and their identification), which may lead to the misuse or discriminatory use of this information; b) psychological harm to patients upon receiving the diagnosis, especially in challenging scenarios such as health crises. It is hoped that this study will contribute to the understanding that genetics-based predictive medicine can become a strong ally in combating epidemics, but its inherent risks need to be mitigated through appropriate legal instruments, such as informed consent, which must provide the necessary conditions for the patient to make a free and informed decision. The methodological approach of this article is essentially qualitative, based on a systematic literature review of primary and secondary sources. Emphasis is placed on the analysis of data protection legislation in Brazil and the European Union, as well as medical ethics guidelines and recommendations from international health organizations.