*Originally published in Jota.

*This is an AI-powered machine translation of the original text in Portugues

The expansion of digital health has profoundly transformed the way individuals access medical information and services. Monitoring technologies, telemedicine platforms, wearable devices, and artificial intelligence have become integrated into both public and private healthcare systems, promising greater geographic reach, increased efficiency, and more personalized care.

These advances raise significant challenges for the already existing tension between physicians’ responsibility and patient autonomy.

Contemporary perspectives in bioethics and the sociology of health point to the progressive relativization of the concept of health, which is no longer understood solely as an objective condition, biologically verifiable and defined under the exclusive technical authority of the physician, but instead incorporates subjective, cultural, and existential dimensions related to the individual experience of well-being and healthy living.

Within this framework, illness comes to be interpreted not merely as an organic dysfunction, but also as a lived and socially constructed experience, thereby expanding the scope of patient autonomy both in identifying suffering and in choosing forms of treatment.

New technologies exponentially increase the amount of information available about the body, habits, probabilistic risks, and individual predispositions, enabling patients themselves to monitor health indicators in real time and participate more actively in defining treatments and lifestyles.

As a result, the physician’s traditional epistemic monopoly is partially displaced, since preliminary diagnoses, automated recommendations, and predictive analyses increasingly influence patients’ subjective perceptions of their own clinical condition.

Because the patient’s subjective perception is shaped by a particular worldview, lifestyle, and conception of what it means to “be healthy,” it becomes clear that the identification of an illness, as well as decisions regarding how best to address it, is neither entirely external and objective nor entirely confined to the individual will of the patient, but rather is relative to a particular cultural context. In other words, it is necessary to recognize an expanded conception of autonomy that accommodates different understandings and interpretations of what constitutes a healthy person or a healthy life.

This observation is critical in multiethnic societies and is particularly relevant when viewed through the experiences of the Indigenous peoples of the Amazon. In these contexts, health is directly connected to territoriality, spirituality, ancestry, community relationships, and environmental balance. This is especially true with respect to one of the principal concerns of Indigenous peoples: mental health, which has become increasingly fragile as a result of cultural tensions and the loss of ancestral territories. Imposing conventional medicine as a universal model, while marginalizing traditional knowledge or delegitimizing Indigenous cosmologies and healing practices, would constitute an undesirable form of epistemological colonization (QUIJANO, Aníbal. Colonialidad del poder, eurocentrismo y América Latina. In: LANDER, Edgardo (ed.). La colonialidad del saber: eurocentrismo y ciencias sociales. Buenos Aires: CLACSO, 2000).

In light of these considerations, well-structured, inclusive, and culturally conscious policies are necessary to ensure that digital health effectively reaches Indigenous peoples. The following sections identify critical issues that must be addressed in this process.

Individual Autonomy and Cultural Perspectives on Care

Many Indigenous peoples maintain their own forms of territorial and community governance, expressed through instruments such as free, prior, and informed consultation protocols, local decision-making committees, and Territorial and Environmental Management Plans (PGTAs). Decision-making processes involve community leaders, elders, shamans, social roles, community-specific consultation protocols, and collective deliberation mechanisms. Within these spaces, discussions about health extend beyond a strictly biomedical or individualistic conception of autonomy and are connected to spiritual, environmental, and collective balance.

In many Indigenous communities, health is not perceived exclusively as an individual biological phenomenon, but rather as the result of a balance among nature, ancestry, territory, and social relationships. The process of care involves rituals, medicinal plants, spirituality, and culturally specific interpretations of illness and physical and spiritual recovery, guided by practitioners of Indigenous medicine who possess ancestral knowledge concerning healing and the protection of life.

In this regard, digital health technologies conceived and developed exclusively from urban and Western reference frameworks may result in subtle forms of discrimination and cultural erasure, beginning with the failure to recognize Indigenous languages, but also through the exclusion of traditional healing practices or the inability to accommodate collective forms of consent within their design.

Structural Inequalities

Many Indigenous villages face limitations related to connectivity, lack of technological infrastructure, unreliable energy supply, and linguistic barriers. Public policies aimed at Indigenous health, in coordination with the Special Secretariat for Indigenous Health (SESAI), recognize that digital inclusion cannot be limited to the mere provision of technological equipment. It is essential to consider digital literacy, the cultural and linguistic adaptation of platforms, and the active participation of Indigenous communities themselves in the design and implementation of technological health solutions.

Without such safeguards, the digitalization of healthcare risks deepening historical asymmetries between urban centers and Indigenous territories, particularly in remote and difficult-to-access regions.

Data Protection and Collective Vulnerability

Health-related data are classified as sensitive under data protection legislation because they reveal aspects of personal privacy and create opportunities for potential individual discrimination.

In Indigenous contexts, however, the risks become even more sensitive, extending beyond the individual sphere, since information concerning population genetics, traditional medicinal knowledge, or disease prevalence may affect entire communities, influencing territorial disputes, economic interests, and the exploitation of ancestral knowledge.

The concept of consent established under Brazil’s General Data Protection Law (LGPD) is rooted in an individualistic framework centered on the will of the data subject. This approach is not fully compatible with Indigenous cultural perspectives and may pose risks when traditional knowledge or identity-related cultural practices are involved. In this context, it becomes essential to reinterpret the concept of consent as a legal basis for data processing and to develop data governance models that ensure meaningful Indigenous participation in decision-making processes.

Artificial Intelligence and Algorithmic Invisibility

The incorporation of artificial intelligence into healthcare systems broadens debates concerning discrimination, transparency, and algorithmic justice.

There is a significant disparity in the availability of digitized data and electronic health records when comparing the public healthcare system with the supplementary private healthcare sector. A substantial portion of digitized health data originates from segments of the population with greater access to healthcare and more privileged socioeconomic characteristics. As a result, AI systems may be trained on datasets that are not representative of the population as a whole, leading to quality-related biases—that is, reduced accuracy when applied to underrepresented populations.

This issue is particularly critical for Indigenous populations, which often have limited access to healthcare services and consequently generate relatively little digital health data.

The advance of digital health is inevitable and has the potential to generate significant benefits, especially in regions historically characterized by limited access to specialized healthcare services, such as Northern and Northeastern Brazil. Telemedicine, for example, expands access to consultations, diagnoses, and medical follow-up without requiring lengthy travel.

However, to ensure that these advances are inclusive and democratic, particularly for Indigenous peoples, certain prerequisites are essential: (i) Indigenous participation in the formulation of public health policies and their coordination with territorial policies; (ii) specific protection of sensitive data relating not only to individual members of Indigenous communities but also to Indigenous peoples collectively, taking into account their collective, cultural, and identity-based dimensions; (iii) transparency, inclusion, and human oversight throughout the entire artificial intelligence lifecycle; (iv) the linguistic and cultural adaptation of digital platforms to Indigenous languages; (v) the strengthening of digital infrastructure within Indigenous territories; and (vi) ethical and intercultural training for healthcare professionals, researchers, and technology developers.

The debate surrounding the digital transformation of healthcare cannot be confined to technological efficiency. Its central concern must be the guarantee of dignified, culturally appropriate, and socially just access to healthcare. In the case of Indigenous peoples, such dignity cannot be reduced to the protection of individual rights alone, but must also encompass the protection of collective identities, traditional knowledge, and distinct ways of understanding the cosmos and life itself.

Authors

Ricardo Moura Antunes – Master’s degree in Political Science (PPGCP/IFCH-UFPA). Specialist in Law, Public Policy, and External Oversight (Uninove/SP); postgraduate student in Ethics in Artificial Intelligence (UFPB); Bachelor of Laws. Specialist in Indigenous Peoples of the Amazon from UFPA. Researcher in the 3rd Research Group on “Artificial Intelligence and Inclusion” and member of the Latin American Climate Lawyers Initiative for Mobilizing Action (LACLIMA).

Juliano Maranhão – Associate Professor (Livre-Docente) at the Faculty of Law of the University of São Paulo (USP); President of the Lawgorithm Association for Artificial Intelligence Research; and Director of the Legal Wings Institute.

Adriana Macedo Marques – Federal Treasury Attorney. Law degree from the University of Brasília (UnB). Master’s degree in Public Administration from the Brazilian School of Public and Business Administration (EBAPE/FGV). Member of the National Council for the Protection of Personal Data and Privacy (CNPD). Currently serves as General Coordinator at the Secretariat for Information and Digital Health and as Data Protection Officer of Brazil’s Ministry of Health.

Lúcia Alberta Baré – Bachelor’s degree in Social Sciences and Master’s degree in Education from the Federal University of Amazonas. She has an extensive career promoting the rights of Indigenous peoples, with experience in education, sustainable development, and territorial management. She is President of the National Foundation for Indigenous Peoples (FUNAI).

Nádia Sarmento – Researcher with the Research Group on Law, Artificial Intelligence, and Emerging Technologies (GETEC/UnB). Master’s candidate in Law and New Technologies. Federal Attorney with the Office of the Attorney General of the Union (AGU). Since May 2023, she has served as Head of the Federal Attorney’s Office attached to CAPES/MEC. Member of LABORI/AGU. She previously worked as a federal legal advisor to FUNAI in Dourados, Mato Grosso do Sul, coordinated the Support Foundations Working Group of PGF/AGU, and served as Interim Coordinator of the National Substitution Team of PGF/AGU.