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This article examines the National Health Data Network (RNDS), the platform launched by the Ministry of Health in Brazil as the primary tool for its Digital Health Strategy 2020–2028, including innovation aspects. The analysis is made through two distinct frameworks: Right to health and personal data protection in Brazil. The first approach is rooted in the legal framework shaped by Brazil’s trajectory on health since 1988, marked by the formal acknowledgment of the Right to health and the establishment of the Unified Health System, Brazil’s universal access health system, encompassing public healthcare and public health actions. The second approach stems from the repercussions of the General Data Protection Law, enacted in 2018 and the inclusion of Right to personal data protection in Brazilian’s Constitution. This legislation, akin to the EU’s General Data Protection Regulations, addressed the gap in personal data protection in Brazil and established principles and rules for data processing. The article begins by explanting the two approaches, and then it provides a brief history of health informatics policies in Brazil, leading to the current Digital Health Strategy and the RNDS. Subsequently, it delves into an analysis of the RNDS through the lenses of the two aforementioned approaches. In the final discussion sections, the article attempts to extract lessons from the analyses, particularly in light of ongoing discussions such as the secondary use of data for innovation in the context of different interpretations about innovation policies.
Drawing on insights from two global symposia that together reported on governmental responses to COVID-19 in 75 countries, this chapter traces two cross-cutting themes that shed greater light on varied impacts on civil liberties and socio-economic rights. First, it considers whether a constitutional state of exception is preferable to using ordinary legislation in managing the impacts on civil liberties of a health and social crisis. The chapter suggests that whether countries are successful in limiting the potential for abuses is best understood in light of socio-historical factors, as well as informal rules that underpin normative and institutional legitimacy, as much as the formal legal vehicles used. Second, the pandemic has exposed the effects of decades of privatization, reduced social spending and rising inequality on health. The chapter suggests that the ways laws structure financing and organization of health systems (public health and care) are as critical to understanding responses as legal recognition of health-related rights. With respect to both civil liberties and health-related rights, the chapter argues that the key to understanding the varied impacts and responses to COVID-19, as well as to consolidating the democratic rule of law post-pandemic, is examining the wider contexts and contingencies that shape how formal legal rules operate.
Human rights are best protected when they enjoy the binding enforceability of the law. Recognizing the binding status of human rights in national constitutions and legal systems is central to demanding accountability, compelling actions and sanctioning violations. Conferring human rights with legal recognition also empowers people and provides the option of pursuing remedies. Furthermore, the duty of the state to protect and respect human rights is triggered when they receive prescription under the law. In Nigeria, however, certain rights pertaining to economic, social and cultural rights do not receive the binding force of constitutional law. This article argues that the judiciary can act as an alternative and complementary recourse to advance and secure the commitment to the right to health. Drawing on a comparative perspective from countries where the judiciary has proactively upheld this right, it maintains that the Nigerian judiciary can take action to enhance the legal and judicial implementation of the right to health.
This chapter discusses the right to health as it is protected by the European Convention on Human Rights, other Council of Europe instruments, in EU law and in international instruments. Attention is paid to eg access to health care, quality of health care, positive obligations and informed consent. In the final section, a short comparison between the different instruments is made.
The socio-economic and productive strength of every nation is determined by the health (the physical, mental and psychological wellbeing) of its people. To guarantee this, the constitutions of some countries, including Nigeria, provide for the right to health, and have framed institutional and policy systems to operationalize and realize this goal, as one of the major objectives of governments. However, despite this great intention on paper, the realization of good healthcare for most of the citizens of this country is still a mirage, despite legal and policy interventions in the form of human rights. The question is, can a rights-based approach to healthcare facilitate or guarantee the realization of this normative claim through access to medical care? This article contends that mere legal and policy frameworks that guarantee the right to health do not automatically engender access to good medical care, as there are hurdles to cross beyond the “limit of available resources”.
This chapter aims to analyze one aspect of the proportionality test in the case law of the Brazilian Supreme Court: its use as a tool for deciding cases involving socioeconomic rights. If these rights are one of the core elements of a transformative constitution, using the proportionality test to decide these cases raises the question of its transformative potential. We argue that there are several reasons for concluding that proportionality does not play a transformative role in Brazil. Some of these reasons are related to the general debate on the transformative potential of litigation; others are related to how the Brazilian Supreme Court uses the proportionality test, which could be summarized as follows: First, the Court has often used the proportionality test as a rhetorical device only; second, due to peculiarities of the decision-making process of the Court, proportionality has never been employed by the majority of its judges; third, in the realm of socioeconomic rights, the role of proportionality has been frequently undermined by other types of reasoning.
This chapter provides an overview of key judgments by international courts and tribunals dealing with environmental and human rights protection. It focuses mainly on regional human rights courts to show how environmental protection has been dealt with under these mechanisms. The objective is not to offer a comprehensive analysis of the environmental jurisprudence of these judicial mechanisms, but to signal how a specific synergistic and anthropocentric framing of environmental protection emerged in catalytic judgments. A particular narrative of how the protection of the environment would benefit human rights – especially the right to health, to life and to adequate living conditions or family life, as well as the right to private property and the right to (ancestral) land – was produced and consistently re-affirmed through judicial cross-referencing. This was done by pointing out how environmental harms and ecological deterioration and pollution directly hamper human rights, including those of indigenous peoples and cultural minorities. In so doing, courts played a pivotal role in strengthening environmental protection in relation to human concerns, thereby also consolidating a particular representation of how a protected environment serves human interests and needs. A specific anthropocentric and synergistic understanding of the human–environment is thereby enacted and reenforced.
The use and development of algorithms in health care, including machine learning, contributes to the discovery of better treatments for patients and offers promising perspectives in the fight against cancer and other diseases. Yet, algorithms are not a neutral health product since they are programmed by humans, with the risk of propagating human rights infringements. In the medical area, human rights impact assessments need to be conducted for applications involving AI. Apart from offering a consistent and transversal substantive approach to AI, human rights law, and in particular the UN Guiding Principles on Business and Human Rights, would allow the targeting of all stakeholders, including the corporations developing health care algorithms. Such an approach would establish a chain of duties and responsibilities bringing more transparency and consistency in the overall process of developing AI and its later uses. Although this approach would not solve all AI challenges, it would offer a framework for discussion with all relevant actors, including vulnerable populations. An increase in human rights education of medical doctors and data scientists, and further collaboration at the initial stages of algorithm development would greatly contribute to the creation of a human rights culture in the techno-science space.
In our globalised world, where inequality is deepening and migration movements are increasing, states continue to maintain strong regulatory control over immigration, health and social policies. Arguments based on state sovereignty can be employed to differentiate irregular migrants from other groups and reduce their right to physical and mental health to the provision of emergency medical care, even where resources are available. Drawing on the enabling and constraining factors of human rights law and public health, this book explores the scope and limits of the right to health of migrants in irregular situations, in international and European human rights law. Addressing these peoples' health solely with an exceptional medical paradigm is inconsistent with the special attention granted to people in vulnerable situations and non-discrimination in human rights, the emerging rights-based approach to disability, the social priorities of public health and the interdependence of human rights.
Despite a recent wave in global recognition of the rights of transgender and gender-diverse populations, referred to in this text by the umbrella label of trans*, international law continues to presume a cisgender binary definition of gender — dismissing the lived realities of trans* individuals throughout the world. This gap in international legal recognition and protection has fundamental implications for health, where trans* persons have been and continue to be subjected to widespread discrimination in health care, longstanding neglect of health needs, and significant violations of bodily autonomy.
This chapter examines some of the most recent human rights concerns including genocide and racism. It also discusses the impact of COVID-19 on human rights including the relationship between government and human rights, the right to health, and technology, and human rights. The chapter highlights the erosion of democratic institutions but looks to the promising future of human rights.
This chapter provides an overview of the public health–inspired conceptualisation of the right to health and its correlative obligations in international and European human rights law. It demonstrates a certain engagement of international bodies with the protection of health while also arguing that a structural and conceptual bias against socioeconomic rights has posed an obstacle for the universal protection and accountability of the right to health of vulnerable people, a category to which irregular migrants belong. For instance, the analysis reveals a disjunct between regulatory obligations and high-threshold rights within the European Convention on Human Rights framework on the one hand and the targeting of comprehensive care while respecting non-discrimination in the International Covenant on Economic, Social and Cultural Rights’ typologies system on the other. The chapter concludes with a close examination of the conceptual and normative value of vulnerability in human rights theory and practice, which should also apply in relation to the implementation of an equity-based right to health.
Chapter 4 considers the human rights relevant to research using linked data without consent; how these rights come into tension with each other and other relevant interests; and how these tensions should be considered and resolved. It notes the emphasis placed in the West on civil and political rights, such as the right to privacy, and the lack of attention to economic, social, and cultural rights, such as the right to health, and how this has resulted in an unbalanced approach to the regulation of research.
This chapter focuses on m-Health, i.e. technologies offered through mobile devices with particular regard to those having a specific health purpose. The contribution highlights that the mass use of these technologies is raising many challenges to national and European legislators, who are now facing a twofold task: assuring safety and reliance of the data generated by these products and protecting patients/consumers’ privacy and confidentiality. From the first perspective, such software may sometimes be classified as medical devices, although this classification is not always easy since there could be “border-line products”. If a software is classified as a medical device, then its safety and efficacy are guaranteed by the applicability of relevant regulations, which dictate specific prerequisites, obligations and responsibilities for manufacturers as well as distributors. From a data protection perspective, the mass use of these technologies allows the collection of huge amounts of personal data, both sensitive data (as relating to health conditions) and data that can nonetheless contribute to the creation of detailed user profiles.
Telemedicine is the delivery of healthcare services by means of information and communication technologies. Although it was initially conceived as a means of overcoming geographical barriers and dealing with emergency situations, the spread of telemedicine in daily practice is reshaping the innermost features of medical practice and shifting organisational patterns in healthcare. Advocates of telemedicine argue that it will redesign healthcare accessibility, improving service quality and optimising costs. However, the use of telemedicine raises a number of ethical, legal and social issues, an overview of which is given in this chapter. The second section deals with the EU policy for the promotion of telemedicine, and reference is made to the provisions offered by the European Telehealth Code. In the third section, some of the major ethical concerns raised by telemedicine are discussed. In the fourth, room is given to the role of telemedicine within the management of the CoViD-19 health emergency. In the conclusions, it is argued that adequate policies and rules are required to ensure a consistent spread and a safe use of telemedicine in alternative to in-person healthcare.
Chapter 4 considers the human rights relevant to research using linked data without consent; how these rights come into tension with each other and other relevant interests; and how these tensions should be considered and resolved. It notes the emphasis placed in the West on civil and political rights, such as the right to privacy, and the lack of attention to economic, social, and cultural rights, such as the right to health, and how this has resulted in an unbalanced approach to the regulation of research.
Robotic technologies have shown to have clear potential for providing innovation in treatments and treatment modalities for various diseases and disorders that cover unmet needs and are cost-efficient. However, the emergence of technology that promises to improve health outcomes raises the question regarding the extent to which it should be incorporated, how, made available to whom, and on what basis. Since countries usually have limited resources to favour access to state-of-the-art technologies and develop strategies to realize the right to health progressively, in this article, we investigate whether the right to health, particularly the core obligations specified under this right, helps implement medical robots.
In most societies, many groups and individuals rely on places beyond the scope of the household to live and enjoy their rights, including their rights to water and sanitation. These groups include persons in penal institutions and detention centres, health care professionals and patients who spend long periods in hospitals and health centres, students in boarding schools and workers who are required to spend considerable lengths of time in open workplaces. They also include people who reside in those spheres because of homelessness, people living in poverty who may lack access to water and sanitation in or near their homes and people who work formally or informally in the public spaces of urban areas. More broadly, they include the general public who commute daily.
This chapter is structured into three main sections. Section 6.2 provides an overview of pharmaceutical patent law in India, while Section 6.3 examines the jurisprudence on the right to health in India. Section 6.4 examines how Indian courts have incorporated a model of human rights into their decisions in cases involving patent rights on pharmaceutical products. The chapter concludes with the view that the combined effect of the liberal interpretative approach adopted with regard to the constitutional right to life and the incorporation of a model of human rights into their decisions in patent cases has enabled Indian courts to safeguard and protect the enjoyment of the human right to health in India while adjudicating cases involving pharmaceutical patent rights.
This chapter provides a summary of the key arguments made in this book. Crucially, the regulatory theory of patent law, which adopts a socio-centric approach to patent law, permits the incorporation of a model of human rights into a country’s patent law system. The model of human rights demands that any regulatory instrument implemented by a state must not constitute a breach of its international human rights obligations. The incorporation of a model of human rights into the design, implementation, interpretation, and enforcement of their national patent laws will help developing countries to preserve their patent policy space and secure access to affordable medicines for poor patients in their countries.