6.1 Introduction

What is science, and what role should it play in the future mediation of our global society? Any discussion of the human right to science ought to begin by trying to answer those two foundational questions. As counterintuitive as it may seem in an age dominated by technology, consensus on how those questions might be answered has thus far proved elusive. More difficult still is elucidating the position of science within a framework of human rights.

It may seem strange at first to talk of science as mediation. Yet science pervades complex societal spaces in areas beyond innovation, technology, and access to their benefits. Science and culture intertwine and overlap, and contribute symbiotically to intellectual creativity and expression in complicated ways. These are best framed and analysed as mediations of complex, bidirectional relationships. This, we believe, offers more invaluable insights into the future role of science in our society.

6.2 Science As Global Knowledge and a Public Good

Several core themes must be appreciated before these questions can be addressed in the modern context, as global interconnectedness, human rights, and cultures have evolved in tandem with science and technology.

Science and culture are symbiotic. Freedom to engage in creativity is central to both and, perhaps more importantly, each informs and shapes the other in crucial ways. General Comment 25, published in April 2020, reinforces this view:

The indelible relationship between science and culture is also reflected in the intentions of the drafters of the Universal Declaration on Human Rights (UDHR). There was, at the time of its drafting shortly after World War II, an intention to promote universal access to both science and culture. Lea Bishop, to whom scholarship in this area owes a great debt, has also suggested that, when the UDHR was being signed, the United Nations had come to envisage the sharing of scientific and cultural knowledge as something that could unite an international community.Footnote ² It would be a “task in common” that would bring people together, uniting them with a common journey of discovery. This would, in turn, help “promote cross-cultural understandings” and “yield a more secure world.”Footnote ³ Understanding science as contributing to knowledge is holistic. Knowledge production is the intellectual and creative activity of engaging with the world around us, which necessitates translating the product of that activity into different forms, only one of which is what we traditionally see as science. Others include art, literature, philosophy, and the social sciences.

For this collaborative intent to truly succeed, knowledge must itself be seen as a public good, there to be shared across the world without exception.

It is not just a question of having access to what people produce, but to the whole process of creativity. It is the ability to fully explore the whole of one’s own potential in all its diverse aspects, to benefit from the creativity of others, and the protection of the moral and material interests that result – as the Covenant stipulates, those which emanate from any scientific, literary, or artistic production.

6.3 Participation in Science, Culture, and Rights Discourses

Human development is about participation, necessitating freedom to fully and actively contribute, and the right to science must also be interpreted from that perspective.Footnote ⁴ It cannot be just about access to the benefits, or the products, of scientific advances. Discourses about access to science are too often framed as exclusively concerning access to the end product, whether an idea or invention. Access also includes the participation of people affected by science, meaning everyone worldwide, as confirmed in General Comment 25.Footnote ⁵

Participation includes the freedom to experiment and fully explore one’s own creative potential, and informed engagement in the political decision-making processes concerning research prioritization. Participation in ethically significant and politically polarized areas and contexts, such as artificial intelligence and the modification of the human germline, raise several tensions and necessitate a reconceptualization of science’s role in modern society. That role cannot be understood outside a cultural context.

One way of conceptualizing the influence science has on rights is through the emerging technologies it has created, and more specifically through of the problem of meaningful consent. This allows us to understand the role science will play in global society in several linked ways. Firstly, in scientific research, consent is the ethical ground zero. This fundamental principle sheds light on two related tensions explored in this chapter. The first concerns the tensions between publicly and privately funded research. The second considers what makes consent meaningful and explores what that means beyond the research context, into the application of such research.

Facebook has conducted at least two now well-known experiments in social manipulation.Footnote ⁶ No consent was obtained from participants in advance. Public outrage seemed not to deter Facebook at all. The second study, published in a prestigious scientific journal, the Proceedings of the National Academy of Sciences (PNAS), “manipulated the extent to which [689,003] people … were exposed to emotional expressions in their News Feed.”Footnote ⁷ Most interesting, however, was the debate between scientific professionals about the role of consent. On July 3, 2014, Inder M. Verma, the then PNAS editor-in-chief, published an “Editorial Note of Concern” responding to concerns “raised about the principles of informed consent and opportunity to opt out in connection with the research in this paper,” and defending publication.Footnote ⁸

A central issue in ethical discourses concerning emerging technology, and information and communication technology (ICT) in particular, regards Big Data: the collection, storage, and analyses of massive databases. The issue of consent is complex and extends beyond scientific research to use of the resulting products, for example in the Terms of Service offered to users of Internet platforms. Recent research demonstrates that reading all the agreements attached to the various applications we regularly use would take something in the order of weeks.Footnote ⁹ Nevertheless, we just click and go on. There is no interaction and certainly we are not informed in any meaningful way. There are few alternatives: in a recent US Supreme Court case, the view was expressed that foreclosing “access to social media altogether is to prevent the user from engaging in the legitimate exercise of [free speech] rights.”Footnote ¹⁰

The lack of genuine consent is of concern where platforms extract user data and then profile those users for marketing and manipulation.Footnote ¹¹ They do so in a way that is opaque, not clearly understood, and unaccountable to a democratically elected body.Footnote ¹² Users are simply not aware of how much data is being collected from their use of these technologies and to what use it has been or will be put. The long-term effects on the well-being of both individuals and communities is unknown to us, but is likely to be considerable. It will reshape cultures in an undemocratic way.

6.4 Data Neutrality

There are frameworks that address the way commercial entities should act in such circumstances: the UN Guiding Principles on Business and Human Rights,Footnote ¹³ for instance, or the Montréal Declaration on the Responsible Use of Artificial Intelligence.Footnote ¹⁴ These are areas in which UN Special rapporteurs are particularly active, drafting instruments and advice for the governing of that surveillance in order to protect our rights to free speech and privacy.Footnote ¹⁵ However, governing these sprawling, global commercial entities is challenging not only because of the transnational nature of their use and influence, but also because many are US-based organizations.

There is particular emphasis in the US context on protecting free speech and the free market, sometimes at the expense of protecting individual and collective rights.Footnote ¹⁶ These technologies and their derivatives, that is, AI and Big Data algorithms, demonstrate that science is fundamentally intertwined with culture and directly impacts how culture evolves. This has significant implications for the right to science and its relationship with other rights.

From a privacy perspective, for example, seeking the deletion of such data is challenging. Europe has recently adopted a different approach to the USA under the GDPR.Footnote ¹⁷ However, there is little consensus among scholars as to whether GDPR will be effective.Footnote ¹⁸ We are faced with tools for our everyday lives that develop so rapidly that governance structures and legislative measures cannot hope to keep up. Fines imposed under regimes like GDPR are easily written off, for example as tax deductible expenses. To huge, wealthy platforms, such fines are merely another cost of doing business. This US emphasis on innovation highlights the tension between access to the benefits of science and its advancements, and intellectual property rights and innovation. There is a balance to be struck between these elements, but it must not be at the expense of other rights or natural justice.

There’s a tendency to presume that data is neutral. It is not. Algorithms predict based on incomplete data in all kinds of areas, and their use will likely increase with time. There is wide consensus among scholars that this will exacerbate existing problems of discrimination.Footnote ¹⁹ This manifests in several ways. Firstly, those currently at the margins of society are also the furthest from access to such technology, exacerbating their inequality. Secondly, algorithms reflect the biases of their creators and training data: their use may further perpetuate societal biases in opaque ways. Further, exclusion leads to skewed or value-laden data.Footnote ²⁰ For instance, if marginalized communities are excluded in some way or another from using various technologies, their data cannot be considered by the algorithms that otherwise govern them. People in authoritarian countries will experience this effect even more dramatically. Dissidents whose voices are violently silenced will have no place in this collected mega data, and it is voices like these, diverse and independent voices, whose data would reflect the true texture of the world we inhabit. Often it is in the margins where change begins, where debate and insight are catalysts for new awareness. There is, for instance, widely expressed concern regarding increased surveillance through smartphone technology as a consequence of the global emergency engendered by the COVID-19 pandemic and the state of that surveillance once the state of emergency has ended.Footnote ²¹

There is, we suggest, no such thing as neutral data just as there is no such thing as neutral research. When investigative research parameters are set out, and questions framed, there is often a way of thinking about assumptions that can combine inherent and often subconscious prejudices. Culture and ideology affects the conduct even of good science. It is worth recalling General Comment 25: the expression, “to enjoy the benefits of scientific progress” is “not restricted to the material benefits or products of scientific advancement, but includes the development of the critical mind.”Footnote ²²

In 2012, during the process of researching the special rapporteur’s report for the UN on the right to science, the need of mobile phones for migrant women workers had become critical. For migrant workers to lose access to their phones – because they were taken from them by their employers – while alone and in unfamiliar parts of the world, in regions and cultures that might be alien to them, meant stripping them of access to any kind of support system. But now we see that telephones, in particular smart phones, also expose them to new kinds of risks – surveillance by private actors and by states, for different but no less potentially damaging reasons. There must always be a balance in terms of who has access to and use of such data, what it is ultimately used for, and what kind of informed consent has been obtained for those uses. Access must not be limited by income or background, and a realistic degree of privacy must always accompany access. When governments and organizations formulate policies and plans of data collection and use, we must acknowledge that it is potentially skewed in unpredictable ways and we must protect those who might be excluded or prejudiced as a consequence.

At a recent meeting on children’s rights in the digital world, as part of the UN Committee on the Rights of the Child’s endeavor to draft a General Comment, it was noted that the young see no difference between their online and offline lives. To them, it is simply one life. The UN takes the view that all the rights enjoyed offline, in the physical world, should also be enjoyed online, in cyberspace. That, we know, is not currently the reality. How we move from simply saying it should be this way, to ensuring those rights can be enjoyed in cyberspace, is one of the core challenges facing human rights in the digital era.

This raises an interesting question. For the moment, we can set scientific knowledge to one side and simply ask, what do we mean when we say “knowledge”? We live in a world where many young people believe that the only valid source of information and knowledge is mediated by ICT. But not all information of value is to be found online. This framing raises a key question on the nature of knowledge itself: Who populates knowledge? In developed states in the Global North, it is easy to forget that not everyone worldwide has the same access to ICT. Even in the digital age, we all contribute to what we consider our vast reservoir of knowledge, but not everyone does so in the same way. What we consider to be “knowledge” is distorted by the gap between those who have access to ICT, to digital means of populating knowledge, and those who do not. This affects how we define who is able to participate in the production of knowledge. Language is another example of how the Global North biases this framing of what constitutes knowledge. It plays a substantial role in who can actually access, contribute to, and therefore participate in knowledge production. It doesn’t matter how advanced a community’s ICT technology is, if a community is unable to communicate in the right languages, very often English, it will not be able to access and participate in knowledge production, or share their own knowledge. In time, artificial intelligence may contribute solutions to this problem by offering translation affordances, but we must not allow participation in, access to, and production of knowledge to be delayed while we wait.

To take this one stage further, knowledge access, production, and participation cannot become monopolized as a consequence of information technology architecture. Regulation and governance structures to avoid the kind of monopolistic practices we are seeing with major Internet platforms and ICT companies must be explored. This inevitably involves an interdisciplinary approach, utilizing tools from other disciplines outside of international human rights law, such as antitrust and competition law. It means reconceptualizing governance structures and approaches that can react more quickly to changes in the landscape of the digital world than can international human rights law. It means, we believe, integrating the norms of international human rights law into governance and regulation structures that do not necessarily need to rely on courts to ensure compliance with States’ obligations and duties. Here again we see the inexorable convergence of science with culture, and of the right to science with cultural rights. This is the value of the initiation of the commons era of knowledge, of “open source,” where anyone can contribute and make access open to all kinds of knowledge production and participation.

6.5 The Tensions between Publicly Funded and Privately Funded Research

Part of this monopoly-based concern centers on scientific research, and research in general, in public institutions that is being increasingly driven by private sector funding. This channeling of scientific interrogation in certain directions is deeply instrumentalist. And as public funding is regularly reduced across the board, even in Europe and wealthy industrialized states, funding for pure research is decreasing.

There is a perception that research must be focused on a product, the need for something tangible at its conclusion, rather than simply the advancement of scholarship and knowledge. This is especially the case when such research is privately funded. Consequently there is little space for purely theoretical research. So much of our early scientific research, whether in the natural and physical sciences, or the social, economic, and political sciences and philosophy, focused on thinking theoretically about the world and the universe it inhabits. There was no demand for a product at the end of that process. Now, the market drives the areas into which research is able to go, and how it explores those areas. It leaves little room for serendipity and, we believe, stifles the very creativity it seeks to foster.

Scientists conducting research are concerned with negotiating patents for whatever it is that they have, before publishing and making their research available to others. The importance of these issues was highlighted in the two 2015 follow-up reports to the UN the right to science, on Patent policy and the right to science and culture,Footnote ²³ and on Copyright policy and the right to science and cultureFootnote ²⁴ and has taken on an even greater significance since. Access to the most prestigious scientific journals can be very difficult. Here, the digital age affords great potential for the sharing of knowledge, and for working with published scientific research. However, the essence of scientific work cannot be usurped by commercial incentives, or hindered by the need to copyright that work before sharing it and inviting its analysis. The core idea of science is that other researchers should be able to freely access, and thereby replicate, test and, if necessary, refute, the theories advanced. This is a process of thinking that requires onward momentum. We know that scientific hypotheses are not intended to be permanent, but should be continually tested. We must be able to communicate freely with each other to share new ideas. Intellectual property ideals cannot hinder that process. Framing the right to science in terms of cultural rights lends that notion added weight.

The other side of the public/private dynamic concerns work carried out in the public sector, but which is then transferred to the private sector. In this, we refer to public sector institutions receiving public funding for research that, on completion, leads to a product or outcome that profits the private sector.

The 2012 report to the UN on scientific progress and its applications and subsequent reports related to intellectual property lawsFootnote ²⁵ were not received without comment, some of it strongly in opposition. The strongest opposition, unsurprisingly, came from highly developed countries and from country representatives in the World Intellectual Property Organization (WIPO). There were expressions of genuine concern about the unrest the report had created.Footnote ²⁶ This highlights a problem of background: the attendees at conferences and symposiums involving commercially or business oriented organizations like the World Trade Organization (WTO) and WIPO have dramatically different perspectives to those attending similar events focused on human rights issues. Private sector companies are rarely seated at tables with human rights scholars and practitioners. The outcome of this division, which has been obvious for some time, is the perception, particularly among scientific practitioners and researchers, that the courts favor market-oriented resolutions rather than those predicated on human rights. There are rare exceptions, of course, where intellectual property rights take a back seat to human rights, both individually but also collectively. Often, however, it is only as a result of public pressure and media attention.Footnote ²⁷

In the consultations and expert group meetings leading to the drafting of the Copyright and Patent reports, there was little in the way of engagement from the private sector. Only when the discussions concerned food-related rights was interest shown by a few private sector people engaged in the agricultural industry. It is hard to overstate the importance of such a diversity of expert opinion on an issue like food-related rights. The future of scientific research in this area is certainly dominated at present by genetically modified food chains. However, the same could be said of almost any area of emergent technology and scientific research: diversity of engagement is key.

In 2009, the then special rapporteur on the right to food identified the increasing application of intellectual property regimes to plant varieties and seeds as a significant threat to food security, particularly for the poor.Footnote ²⁸ Intellectual property regimes focus exclusively on the commercial seed system, overlooking farmers’ informal systems. National rules frequently prohibit even small farmers and public institutions from sharing, replanting, and improving seeds covered by patents and plant varieties.Footnote ²⁹ The “excessive protection of monopoly rights over genetic resources can stifle progress in the name of rewarding it.” Such an approach “undermines the livelihoods of small farmers, traditional and not-for-profit crop innovation systems, agro-biodiversity as a global public good and the planetary food system as a whole.”Footnote ³⁰ The critical point to recognize is that (at least) two parallel agricultural systems exist, and should continue to exist together and in harmony: the commercial seed system and the farmers’ seeds (landraces) or informal systems.Footnote ³¹ This is where the biodiversity emerges from.

Farmers working for generations with particular grains, and experts working in food technology, have valuable insight to offer. Wild seeds need to be mixed in with other varieties, for example, and the result then steeped in the chaotic complexity of nature, in order to draw out higher yielding seeds. Intellectual property regimes cause tension in other ways. Some new commercial patented seeds specifically block reproduction so cannot be replanted unless farmers pay again for the technology to release the reproductive part of the seed. Yet, and perhaps ironically, GMO patented seeds could not have been developed without the very same landraces seeds they threaten. Still commercial enterprises bring legal actions against farmers who harvest plants that include their patented seeds even if it is the wind that has carried them to adjacent fields.

Similar experiences can be gleaned from the perspective of indigenous peoples and small, local communities. The Small Island Developing States, for example, particularly those in the Pacific region, who do not consider themselves “indigenous” in the way developed States have tended to label them, possess considerable traditional knowledge, but they hold it communally. In such communities, knowledge is considered a common good. There are no individualized rights of property. When we consider the concept of moral and material interests of the author, for example, they respond that they are the collective authors, and the collective holders, of that knowledge. They are also its stewards and, as such, it is passed down from generation to generation.

Clearly, intellectual property law clashes violently with this normative system because it rejects the notion that such knowledge could be owned by any one individual or corporate entity. However, where such indigenous knowledge has been retained, cultivated, and improved over many generations, and in a way that is directly influenced by and sympathetic to the particular conditions of the region, it often becomes valuable to Global North commercial entities. In a situation where such intellectual property rights are simply unknown to such communities, it is easy to appropriate that knowledge for commercial purposes without the kind of compensation or recognition that would attach to researchers from the developed world doing similar work. Such appropriation has become widespread and is known as biopiracy, or in terms that are less politically charged, bioprospecting.Footnote ³² The neem tree case,Footnote ³³ which concluded a decade of litigation in 2005, provides a stark example of traditional knowledge becoming the subject of a prolonged patent battle and the tensions between different normative approaches in patent systems. It also offers a potential way forward to protect traditional knowledge. In the United States, prior knowledge or use which would deny a patent was recognized only if previously published in a printed publicationFootnote ³⁴ – not, for example, if it had been passed down through generations of oral tradition. The European Patent Office (EPO), who had initially granted a patent to develop antifungal products to the US Department of Agriculture and multinational WR Grace in 1995, eventually agreed that the neem had actually been in use in India for a very long time.Footnote ³⁵ Since that case, India has bought about the cancellation or withdrawal of numerous patent applications relating to traditionally known medicinal formulations. Its Traditional Knowledge Digital Library (TKDL), a database containing millions of pages of formatted information on more than two million medicinal formulations in multiple languages, “bridges the linguistic gap between traditional knowledge expressed in languages such as Sanskrit, Arabic, Persian, Urdu and Tamil, and those used by patent examiners of major IP offices.”Footnote ³⁶

If unchecked, privately funded research and intellectual property law can act to encloseFootnote ³⁷ the products of creativity and access to knowledge, whether that research arises out of traditional scientific practices or the exploitation of indigenous or traditional knowledge.Footnote ³⁸ As General Comment 25 observes:

6.6 The Importance of Critical Thinking and Human Rights in Knowledge Production

This chapter began by asking what science actually is and what role it should play in mediating our global society. In its concluding paragraphs, we hope to draw the preceding threads together to begin answering those questions. What then is the added value of a human rights approach to this idea of science and its role? Equality is key. A diversity of input is essential. Decolonization of knowledge is fundamental. What science’s role in society should be cannot be answered without reference to who has control over it, who decides what is or is not “scientific” research, and how its best methodologies are determined.

We build an idea of the role science ought to play by drawing on international legal instruments such as General Comments, particularly the CESCR’s General Comment 25, and other UN documents, in particular the 2017 UNESCO Recommendation on Science and Scientific Researchers.Footnote ⁴⁰ That idea focuses mainly on empirical science, that which can be tested and refuted, but also includes knowledge from diverse sources, including traditional knowledge. It requires that we apply to knowledge a degree of critical thinking. It requires the understanding that such knowledge may one day be proved wrong, or no longer apply, and that this, in itself, is deeply valuable. Even local communities, who have stewarded traditional knowledge from one generation to the next, may benefit from a university or similar institution doing further research. Their own knowledge is then tested and refuted or confirmed, but in either case it is built upon. Traditional knowledge may not be derived from the same rigorous principles as those that govern the practice of scientific research, but it has an important place in our reservoir of knowledge. Such communities may have explanations for phenomena that may at first seem rooted in superstition or ritual but often are based on invaluable lived experimentation. We must accept that the conceptualization of knowledge derives from different perspectives on the world – and that nevertheless each can contribute precious knowledge.

The progress of science and access to its benefits means different things to different groups, cultures, and societies. An understanding of science and what it should do, will be very different for the agricultural industry than it will be for the individual farmer, although they may share concerns about seeds and productivity. It will be more different still for younger people in the digital age, than for those of us who remember a time before information and communication technology, or before the Internet and social media.

We have highlighted the importance of participation in science, whether this relates to participation in research, or to access to the benefits of that research, be it through an end product or the furtherance of future research. But this also includes participation in decision-making about how science ought to contribute to society. Science has the capacity not just to contribute through end products and usages, but also through knowledge and education. It contributes a particular way of critical thinking which is valuable as a methodology for approaching all the vast and sometimes chaotic information we are confronted with in the digital age.Footnote ⁴¹ As the Committee puts it in General Comment 25: “doing science does not only concern scientific professionals but also includes ‘citizen science’ (ordinary people doing science) and the dissemination of scientific knowledge. State Parties should not only refrain from preventing citizen participation in scientific activities but should actively facilitate it.”

However, in the digital age, as technology progresses at an ever-accelerating pace, expertise has become even more indispensable. It is impossible for ordinary people to be even reasonably cognizant of all the technological advancements taking place at a given moment in their own society, much less be knowledgeable enough to make informed decisions about economic, political, social, and ethical considerations concerning those developments. By definition, there is a necessity, when considering what participation in science actually means, and therefore in the decision-making processes that govern how it mediates our individual and collective societies, to take into account the wide diversity of contributions that individuals in a society are capable of making. We suggest viewing participation as a continuum on which all contributions can be seen, analyzed, and made use of.Footnote ⁴² Public consultations can be valuable, and are made easier by ICT in the networked, digital age, but the extent to which even a well-educated public can valuably contribute to informed policy and decision-making processes is debatable.Footnote ⁴³ Yet, to discount such participation would be undemocratic and undermine the political ideologies of most developed States.

6.7 Interdisciplinary Relationships Allow Diversity within Discourses

A further complication exists among even those who are experts in a given field: specialism. Few experts in technology fields are experts in the entirety of that field. Gone are the days when science commentators could usefully comment on the detail of a given scientific or technological discipline. An expert in particle physics may have something useful to say on the generality of artificial intelligence and the ethics of its various applications, but this is quite probably where their contribution would end. That same expert might have even less to say on the issues relating to biomedical research. So, how do we ensure the opportunity for participation from everyone in a meaningful way?

It begins with transparency, and progresses to valuable contributions through education – popular and life-long education about what emergent technologies actually involve and what the ethical debates surrounding their use really mean. Only a small cadre of experts in a given field understand its applications, but even they are not experts in how those applications might impact society in the short, medium, and long terms. It is not only human rights scholars and practitioners who express concern about those in the technology industries dictating how human rights will apply to the myriad applications of their technological innovations – many in the technology industries themselves accept they should not be making those kinds of decisions. One key example is content moderation by Internet platforms. The frameworks applied by the platforms to govern speech on their networks only approximates human rights norms, and very often, given the US-centric approach, is informed only by the First Amendment to the US Constitution, rather than by regional and international human rights instruments and jurisprudence.Footnote ⁴⁴ A framework already exists, but it is not the framework platforms are using to regulate speech in the principal environment in which speech now takes place.Footnote ⁴⁵ This conflict cannot continue and can only be resolved through interdisciplinary approaches that necessitate conversations and cooperation between specialists in disparate areas.

Commercial incentives driving innovation, and therefore the practice of scientific research, must not ignore fundamental human rights principles. The right to science necessarily influences and supports in a cross-cutting way the application of science and technology, and discussion of the ethics of both, to many other human rights. Experimentation in the behavioral and neurosciences, for example, where consultation and consent are in issue because a private entity conducts the research rather than one is that is publicly funded and therefore subject to different legal scrutiny, identifies a lacuna that is becoming more pervasive and dangerous. Potential harms ought to be identified and debated, and here again transparency is key. Trade secrets have, for too long, made the products of scientific research opaque and unaccountable. This problem, as we have already identified, is significant in the area of bias in algorithms. Related to this, in the criminal law context, algorithms currently assist law enforcement and courts in ways that are almost entirely opaque and therefore unknowable to the subjects of those investigations and court proceedings.Footnote ⁴⁶ Independent oversight structured so as to protect trade secrets is possible, but technology innovators resist it. The balance towards commercial interests at the expense of human rights and notions of natural justice and due process has leaned too heavily the wrong way for too long. Commercial entities have greater resources and influence and have used that to unbalance the field in their favor. They are not accountable to the human rights system, nor do they sufficiently participate or engage with it.Footnote ⁴⁷ In fact, they are beginning to claim false legitimacy from the language of human rights without being properly bound by its norms. This must change.

Another way in which the difficulties inherent in participation as a result of barriers imposed by specialist expertise may be addressed is through the formation of interdisciplinary groups and organizations whose debates and cooperation take advantage of diverse viewpoints and expertise. These can be both formal and informally constituted, but they must include stakeholders for a wide variety of interested, but appropriately qualified groups; from private industry as well as the public sphere. In all of the consultations and meetings preceding the Patent and Copyright reports to the UN in 2015, where anything relevant to intellectual property was to be discussed or that might conceivably have relevant implications, WIPO was present. Yet those representatives from WIPO who attended seemed to be isolated within the wider organization. While they themselves were responsive, their institution did not necessarily speak with a unified voice or a unified narrative. Private law and public law conversations must overlap, particularly those having human rights implications. Here again, culture intersects with science and cultural rights inform how the right to science, and participation in science in all the guises we have discussed, must be interpreted.

In the ICT arena, given the transnational nature of Internet platforms and networked communication and interaction, such interdisciplinary and international collaboration gains greater significance. We have identified a problematic divide between the way human rights have traditionally mediated the relationship between the individual and the State, but not between the individual and private entities. Yet private entities, even those with purely commercial incentives, can and should play an important role in facilitating this relationship. Such actors have changed the appearance of the rights landscape, and human rights thinking will need to adapt as a consequence. Human rights scholars and practitioners must find like-minded allies in the private arena. Until we actually come together in discussions on issues that impact law and policy, it doesn’t matter what guiding principles we may have for businesses. These are not binding instruments, so we must always be keen to have further conversations in order to actually make rights collaboration a reality on the ground. CESCR has said very clearly that the State where an individual is a citizen has responsibilities, duties, and obligations in respect of rights, but that in reality it doesn’t always work that way. Private entities, particularly influential nonstate actors like Internet platforms, actually have, we believe, a part to play in removing lacunae and ensuring compliance with rights.

6.8 Concluding Remarks

It remains to be seen what impact the CESCR’s General Comment 25 will have, but it seems clear it is a stepping stone to something else; the opening of a door to a more complex, nuanced debate and, perhaps, a renewed importance for the right to science, and an evolving role in the protection of other human rights. It highlights, we believe, the need for (1) a broader perspective on the right to science, and (2) concrete mechanisms for giving effect to its core principles outside of human rights law. One clear statement it makes is to emphasize the symbiotic relationship between the right to science and cultural rights. We repeat the following: “Cultural life is an ‘inclusive concept encompassing all manifestations of human existence’ … Thus, the right of everyone to take part in cultural life includes the right of every person to take part in scientific progress and in decisions concerning its direction.”

For the justiciability of the right to science to become a reality, we must recognize that the modern landscape of rights and technology is complex and nuanced, and raises many unknowns. A useful approach might be to pick perhaps one or two discrete areas of concern in order to determine what it is that can really be done and which would allow a certain balance to be achieved, rather than attempting to solve the whole problem at once. Collaboration, as envisaged by the drafters of the UDHR and as required now in the interdisciplinary contexts we believe are necessary, involves steep learning curves for all involved, and a willingness to step out of comfort zones and be vulnerable. All involved will be characterized by their own compulsions and obligations, whether they are representatives of a State’s executive organs and institutions, or human rights practitioners and scholars, or those with private commercial interests. We must attempt to understand each other’s interests and obligations, and see the discourse from the perspective of those on the opposite side.

Science can and should be common ground; a way of thinking and approaching the problems critically, but also a means by which knowledge production and serendipity can be optimized. Academics from different disciplines, who are steeped in those scientific ideals of testing and refuting, are one way in which that interactive discourse can be facilitated. Perhaps most importantly, in the digital age, is the need for technology professionals and technology industry representatives, particularly those with some influence within their organizations as well as independent experts, to be present and to engage fully and openly. And while it would be valuable to have some of these groups formally discussing these areas under the auspices of international organizations like the UN and UNESCO, through the Office of the High Commissioner for Human Rights (OHCHR) and the principal treaty bodies, it is important given how swiftly technology moves, to have adaptable frameworks for discourse and informal policy advice that is truly interdisciplinary and diverse.

7.1 Introduction

The promotion of justice, the rule of law, and human rights as prerequisites for the consolidation of peace and security is common ground in the United Nations (UN) system. The uniqueness of the mandate of the United Nations Educational, Scientific and Cultural Organization (UNESCO) lies in the specificity of its pathway and its approach to peace. For UNESCO, the achievement of these goals is promoted through greater “collaboration among the nations through education, science and culture” (Article 1 UNESCO Constitution).Footnote ¹ In addition to delineating the Organization’s playing field, this proclamation carries a double symbolic value. Firstly, it presages the inclusion of a science-related human right in the Universal Declaration of Human Rights (UDHR). Secondly, it places emphasis on the significance of international cooperation and exchange if science is to fulfil its role in promoting human well-being. While education is a field where competition among UN agencies grew considerably over the years, the broad domains of science and culture are still mainly the prerogative of UNESCO.

By virtue of this mandate, UNESCO has adopted legal instruments and has developed programmes and activities in the field of science and human rights, most notably in the field of bioethics and the ethics of science. Its Member States have created several bodies to advise on issues and challenges relating to these topics: the Intergovernmental Bioethics Committee (IGBC)Footnote ² composed of representatives of Member States; the International Bioethics Committee (IBC)Footnote ³ composed of independent experts; and the World Commission on the Ethics of Scientific Knowledge and Technology (COMEST),Footnote ⁴ also composed of independent experts.

The articulation of human rights and science is interwoven with UNESCO’s efforts to implement new global frameworks such as the 2030 Agenda for Sustainable Development and its Sustainable Development Goals (SDGs) and the New Urban Agenda. It was also an important dimension of the Organization’s responses to the challenges of the COVID-19 pandemic. This approach builds on UNESCO’s lead role in the Scientific Advisory Board, the UN expert body that was established in 2013 to bring science to the core of the sustainable development agenda.

This contribution discusses how UNESCO has worked on human rights in relation to science, and on science in relation to human rights with emphasis on standard-setting. It attempts to foreground the core approaches underpinning these efforts; to highlight the evolution in the Organization’s thinking; and to show to what extent these are aligned with and promote the advancement of the right to enjoy the benefits of scientific progress as included in human rights instruments, in particular the dimensions of scientific freedom, protection against harm, benefit sharing, and international cooperation.

7.2 Foundations of UNESCO’s Action on Human Rights

7.3 UNESCO’s Approach to Science and Human Rights

UNESCO’s work in the field of science and human rights, and in particular the right to enjoy the benefits of scientific progress and its applications, has evolved significantly. The Organization has explicitly focused on promoting an ethical and rights-based approach to the advancement of science and technology, inter alia, by fostering the rights and freedoms of scientific researchers and an equitable sharing of the benefits of that research. It has also addressed the ethical challenges deriving from cutting-edge science, for instance in connection with bioengineering and biotechnology, and, more recently artificial intelligence, big data, and the Internet of Things. Its work has also supported a stronger interlinkage between scientific evidence and policy-making and it has fostered gender equality in sciences by strengthening the opportunities of women. A good example of the last is UNESCO’s program For Women in Science, which it has hosted since 1998 in cooperation with L’Oréal. The motto of this program is “the world needs science, science needs women.” It aims to reward excellent female scientists for their important contributions to the progress of science, either in life sciences or in the fields of physical sciences, mathematics, and computer science. In the last 20 years, more than 3100 scientists from 117 countries have been supported and more than 50 countries grant national and regional scholarships under the flag of this program.Footnote ¹⁴

7.4 Concluding Remarks

The significant role of science in consolidating peace, fostering human well-being, and achieving sustainability cannot be overestimated. Hence, it is only natural that science, technology, and innovation were woven into the fabric of the 2030 Agenda for Sustainable Development, cutting across virtually all of the seventeen SDGs, including their targets and means of implementation.

This contribution shows that UNESCO, with its specific mandate in the field of science, has worked on human rights in relation to science, and on science in relation to human rights, in many different ways. Shifting over the years from a narrower to a more holistic approach, it has developed numerous instruments that connect the advancement of science to ethical and human rights standards and principles. These include academic freedom and protection of the rights of scientists, protection against harm, sharing benefits of scientific and technological advancements, including related knowledge and their applications, international cooperation and, more recently, science-based decision-making. In addition, UNESCO embarked since November 2019 on the elaboration of two new instruments: on ethics of artificial intelligenceFootnote ³⁴ and on open science,Footnote ³⁵ potentially enhancing the science-related normative arsenal. Standard-setting efforts have been reinforced by converging advocacy initiatives such as the Joint Appeal for Open Science, launched by the leadership of UNESCO, WHO and OHCHR in October 2020. The appeal acknowledged the right to enjoy the benefits of scientific progress and its applications as the cornerstone of efforts to promote open, inclusive and collaborative science. The idea of linking science to human rights has clearly underpinned UNESCO’s position and advice during the COVID-19 pandemic. For example, it is a central tenet of the statements issued by the Organizations’ ethics bodies, COMEST and IBC on global ethical considerations and on global vaccines equity and solidarity.Footnote ³⁶

It should be noted that all UNESCO science-related instruments – being declarations or recommendations and not treaties – are not legally binding upon States. Moreover, their monitoring is mostly State-drivenFootnote ³⁷ and therefore not comparable to that relating to UN human rights treaties and their expert bodies.

Yet, these instruments demonstrate a large degree of consensus among States on the need to promote science as a public good accessible to all and to integrate human rights norms and principles into the advancement and promotion of science and technology and related policies. At the same time, it is important that the articulation of the link between science and human rights goes beyond the realm of aspirations.

The General Comment on science and economic, social and cultural rights,Footnote ³⁸ adopted by the Committee on Economic, Social and Cultural Rights, is a milestone in removing some of the normative ambiguity. The General Comment reserves an important place for the work of UNESCO. Further to reiterating the definition of science developed by UNESCO, the General Comment recognizes particularly the Universal Declaration on Bioethics and Human Rights and the Recommendation on Science and Scientific Researchers, as sources of inspiration for the elaboration of the relationship between science and human rights. The various dimensions of academic freedom,Footnote ³⁹ protection against harm,Footnote ⁴⁰ sharing benefits of scientific and technological advancements,Footnote ⁴¹ international cooperation,Footnote ⁴² and science-based decision-makingFootnote ⁴³ – that the Committee considers part of the core obligations of States in the implementation of the right to enjoy the benefits of scientific progressFootnote ⁴⁴ – are prominent in those UNESCO instruments.

In light of this development, the emphasis now needs to be placed on developing appropriate tools, instruments, and guidance for States and other stakeholders to implement these ambitious standards through sustainable laws, policies, and practices. A large part of the challenge ahead derives from the breadth of the approach. Indeed, a comprehensive vision of science – going beyond benefits sharing, and the prevention of the negative effects of scientific development – emerges as the necessary point of departure for all related efforts. The UNESCO instruments actually build that case convincingly. However, while a comprehensive approach can respond more adequately to the complexity of the issues at stake, it also raises the difficulty of translating the vision into praxis. In the absence of clear guidance and extensive State practice, the numerous and broad principles contained in the 2017 Recommendation could hamper or discourage implementation and risk transforming the instrument into an empty shell. The first monitoring of the 2017 Recommendation, launched in 2020, offers an opportunity for addressing some of the many operational challenges. However, unless that process engenders the development of specific programs by UNESCO, its Member States, and other stakeholders, the hurdles will remain high if not insurmountable.

Clearly, a positive change also depends on the uptake of issues linked to the right to enjoy the benefits of scientific progress and its applications by the Committee in its examination of periodic reports. Current reporting and the related discussions with States Parties are insufficient. The recently adopted General Comment could be an excellent tool to promote such reporting and discussions before the CESCR. An ideal development would be that monitoring by the Committee and that of the UNESCO instruments evolve to be seen as mutually beneficial and reinforcing one another. The enhanced operational convergence resulting from such an approach is likely to spill over into other human rights monitoring processes, including the Universal Periodic Review of the UN Human Rights Council where broader science-related issues remain absent.

Investing further in strengthening coordination and coherence across the UN system towards a closer articulation between science and human rights should be a priority in the years to come. Integrated approaches are necessary in view of the multitude of entities working in the vast realm of science. They become even more compelling given the interconnectedness between the different scientific fields at a time when the UN is expected to focus increasingly on accelerating the implementation of Agenda 2030 while coping with the consequences of the COVID-19 pandemic. The September 2019 SDG Summit addressed an urgent call for accelerated action, premised on human rights and the “leave no one behind” vision. It also reiterated the importance of science, technology and innovation for sustainable development, placing emphasis inter alia on promoting the use of scientific evidence from all fields, empowering all persons with relevant knowledge and skills and fostering international cooperation.Footnote ⁴⁵ Furthermore, the UN General Assembly acknowledged the need for science-based comprehensive and coordinated responses to the COVID-19 pandemic.Footnote ⁴⁶

Given the frenetic pace of scientific innovation but also its critical role in addressing challenges to human well-being – the COVID-19 pandemic being a tragic reminder thereof – it is crucial that the discussion about operationalizing the link between science and human rights advances urgently and that it involves all concerned stakeholders. Their ownership of contemplated solutions will be a key success factor. The increasing focus of scientific and engineering communities on problem-solving in relation to development challenges presages that a call for cooperation will not remain unanswered.

Whether the right to enjoy the benefits of scientific progress and its applications is a cultural right is a fundamental question and far from a matter of mere form.

A positive answer invites us to reconsider the meaning of, and to give full scope to, the “right to science” increasingly invoked today in academic and NGO circles, as well as by human rights mechanisms. Considering the right to enjoy the benefits of scientific progress and its applications as a cultural right means understanding it as an integral part of the rights that enable people to access and make use of the most diverse sources of knowledge and the cultural resources most meaningful for them. It also means enabling people to contribute to those resources, and to use them for the benefit of their own dignity and development.

Consequently, this right is more than simply a right to science. The time has come to speak of a much more substantial “right to participate in scientific life” and to see it as a component of the right to participate in cultural life. This right enables everyone to have access to, and contribute to, the development of science, and to exercise his or her critical and scientific spirit in everyday life.

This does not mean that everyone ought suddenly to become a high-level scientific researcher; but rather, that everyone can aspire to be a researcher in his or her own spheres of interest, using and deploying knowledge for the benefit of his or her own development. Herein lies the eminently human and emancipatory dimension of this right.

8.1 Pure Formal Reasons

Several elements, both in international human rights treaties and declarations, as well as in the practice of monitoring mechanisms, call for the right to enjoy the benefits of scientific progress and its applications to be considered as a cultural right.

In the first place, the right to enjoy the benefits of scientific progress and its applications is often found juxtaposed with the right to take part in cultural life in universal and regional texts. In particular, it is to be found in Article 27 of the Universal Declaration of Human Rights (UDHR) and Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), which are usually considered to set out cultural rights.Footnote ¹

Furthermore, the resolutions of the Human Rights Council establishing and subsequently renewing the mandate of the Special Rapporteur in the field of cultural rights expressly mention the right to enjoy the benefits of scientific progress and its applications as an integral part of the Rapporteur’s mandate. The Special Rapporteur has devoted an entire thematic report to this right.Footnote ² Member States of the Council seem to have naturally considered, by consensus, that the right to enjoy the benefits of scientific progress and its applications is a cultural right.

8.2 Substantive Reasons

But these elements are ultimately only formal indications. The argument that the right to enjoy the benefits of scientific progress and its applications should be considered as a cultural right is supported by far more substantial grounds. Its proximity in the texts to the right to take part in cultural life seems to be no coincidence. It appears, at least, to be the result of a particularly accurate intuition on the part of the authors of the founding texts. And, as will be explained below, it makes it possible today to deploy the scope of this right in a far more powerful and significant manner.

When one looks more closely at the structure of Article 15 of ICESCR, one understands that, when taken as a whole, it is the universal right of access to culture and science that is protected by this provision, as Farida Shaheed, the first Special Rapporteur in the field of cultural rights, has emphasized.Footnote ³ The right is accompanied by correlative obligations on States to respect and protect creative freedoms; to respect and protect the moral and material interests resulting from scientific, literary or artistic productions; to ensure the conservation, development and diffusion of science and culture; and to develop international contacts and cooperation in these fields.

But there is an even more fundamental reason for considering the right to enjoy the benefits of scientific progress and its applications as a cultural right: science is part of culture.

8.3 Significant Impacts

When considering why the question of whether the right to enjoy the benefits of scientific progress and its applications is a cultural right is important, one might be tempted to ask what difference such an understanding actually makes. Is this a purely theoretical discussion without practical implications, or are there important consequences to understanding the right to enjoy the benefits of scientific progress and its applications as a cultural right? Framing the question this way will help evolve our understanding of the content of the right.

8.4 From the Right to Enjoy the Benefits of Scientific Progress and Its Applications to the Right to Participate in Scientific Life

One matter considered by the Committee during its discussions on the text of the General Comment concerned whether it would be appropriate to speak of a “right to science,” rather than of a “right to enjoy the benefits of scientific progress and its applications.” It is true that the expressions “right to culture” and “right to science” are often used to refer to the rights contained in Article 15 of the ICESCR.

These expressions, which are also sometimes used by the Special Rapporteur in the field of cultural rights, are intended to give full scope to the rights set out in Article 15, which, it should be recalled, enshrines a universal, fundamental right of participation in and access to culture, including science. This was the approach adopted by Farida Shaheed, who also found that “right to science” was a strong formula that was more striking.

A similar proposal had been made by the Committee in a Draft General Comment that it circulated for comments on January 20, 2020. A whole paragraph 89, at the end of the document, proposed to use a “single broad concept named the human right to science.” However, that proposal was not retained in the final version of the General Comment.

Indeed, if we are not careful, these expressions (“right to culture,” “right to science”) can misrepresent the content of the rights and give a truncated and incomplete vision of them. On the one hand, with such expressions, culture remains separated from science. Science, understood as “verifiable and testable knowledge,” must not be situated in opposition to “culture,” but to “belief” (although there are some grey areas). Furthermore, we still speak of “culture” (which culture?) and “science” in the singular form, even though we are in front of what should be called “cultural” and “scientific diversity.”

Finally, this risks reducing the right to the notion of access only (whether to culture or to science). While access to both culture and science is obviously extremely important, in its General Comment No. 21, the Committee considered the right to participate in cultural life as concerning rights to participate in, contribute to, and have access to cultural life. A reductionist access-based approach risks reducing the rights-holder conceptually to a “consumer” of rights, whereas the spirit of human rights demands that he or she should be understood as a citizen and actor, an agent of his or her own rights.

If these expressions are used, then they must be defined so as to avoid these pitfalls, emphasizing not only the crucial issue of access, but also participation and contribution, which are no less fundamental.

8.5 Conclusion

The inclusion of the right to share in the benefits of science within the main provisions of the UDHR and the ICESCR devoted to cultural rights is fundamental. For culture is also science. This is not to level the playing field and consider science to be of the same nature as a philosophical or religious conviction, practice or way of life. No, it does have a specificity, and must be understood as “verifiable and contestable knowledge,” with “the possibility of revising and rejecting existing conceptions and theorems.”

However, science is not above culture either, it is part of it. And it is from a multitude of cultural resources, including scientific resources, that people build their identity, their world view and their humanity.

This chapter will explore the unique and critical importance of the right to science for people with intellectual, physical, and mental health disabilities. To put the subject in a global context, approximately one billion people, or 15 percent of the world’s population, experience some form of disability, and disability prevalence is higher for developing countries. One-fifth of the global total, or between 110 million and 190 million people, experience significant disabilities (The World Bank, 2019). Science and the products of science are critical to the realization of the human rights of people with disabilities and to their inclusion in society. This is especially true in the time of the corona virus pandemic which has presented additional challenges for people with disabilities over and above those visited on the general population.

The right to science, this chapter will suggest, is a powerful tool to support and inform other rights as they relate to people with disabilities. In an age dominated by fast-paced technological advances, the right to science represents a meaningful way to protect the relationship between the scientific community and people with disabilities. It is vital that people with disabilities are not excluded from decisions about scientific priorities, the conduct of scientific research, and the design of technology that will impact their lives. Diversity in the development of new technology such as algorithms, for example, is essential in order to reflect the characteristics of those people who will ultimately be governed and affected by them. For example, informed consent policies for people with intellectual disabilities are required in order to ensure that they are neither exploited nor excluded from scientific studies.

The ensuing discussion in this chapter will include the history of the disability rights movement, the ways in which the Convention on the Rights of Persons With Disabilities reaffirms the right to science, the role of science in the lives of people with disabilities – both positive and negative, the importance of scientifically based treatment interventions, the importance of including people with disabilities in scientific research and the ability of people with disabilities to gain access to scientific findings. It will conclude with some recommendations for a more inclusive approach that embraces the views and needs of people with disabilities in the scientific enterprise, including access to science as part of international monitoring of the CRPD by the Special Rapporteur and the Committee on the Rights of People with Disabilities.

9.1 History of the Disability Rights Movement

The 1960s are remembered as a period of disruption. This disruption took the form of social protest against racial segregation, authoritarianism, colonialism, discrimination against women, and an unpopular war. In the United States, this period also saw the mobilization of people with disabilities and their families. In the mental health field, consumer groups like the Mental Patients Liberation Front took on involuntary treatment and forced medication. They argued for housing, jobs, and income supports in addition to psychiatric services (Reference ChamberlinChamberlin, 1990). In the developmental disabilities field, the fledgling Association for Retarded Children (now The Arc) organized families around the country to advocate for a more positive public perception of children with intellectual disabilities and their potential (The Arc, n.d.). They sought concrete reforms such as access to education, preschool, and jobs. In the physical disability community, important figures such as Ed Roberts – one of the founders of the historic Berkeley Center for Independent Living in 1972 – rallied people with physical disabilities to take charge of their own lives, to demand the support they needed to live independently, and to reject the medical model and the notion that they needed to be fixed (Reference AndersonAnderson, 2013). Finally, activism among the elderly also burgeoned during this period, as groups like the Gray Panthers argued against forced retirement and in favor of better health care, housing, and income support (Reference SanjekSanjek, 2009).

The emergence of advocacy for the human and legal rights of people with disabilities was not limited to the USA. Similar movements were taking place around the world as people with disabilities and family members advocated access to education, income support, employment, and inclusion in their communities. In 1969, a group of parent-sponsored organizations from around the world formed The International League of Societies for the Mentally Handicapped (Reference DybwadDybwad, 1975). The group would later become known as Inclusion International. Subsequently, multiple groups representing specific disability organizations formed in multiple countries, but it wasn’t until 1999 that an international pan-disability alliance was forged – The International Disability Alliance (International Disability Alliance, “Who We Are”). The Alliance brought together a global network of previously separate disability organizations under one umbrella. Some of the groups that joined forces were the World Blind Union, the World Federation of the Deaf, the World Network of Users and Survivors of Psychiatry, and the International Federation of Hard of Hearing People. Regional networks such as the Arab Organization of People with Disabilities and the Latin American Disabled Persons Organization were included in 2007, as well as regional organizations of persons with disabilities and their families.

The IDA was instrumental in establishing the International Disability Caucus (IDC) which was comprised of global, regional, and national organizations of persons with disabilities and allied non-governmental organizations (NGOs). The IDC became a critical player in negotiations regarding the provisions of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (UN General Assembly, 2007)).

According to an interview with Diana Samarasan of the Disability Rights Fund (Reference BellBell, 2014), the negotiations that preceded the passage of the CRPD were unique in that one-third of the seats in the working group that drafted the treaty were reserved for people with disabilities. Samarasan stressed that the process brought together people with disabilities from around the world and from different disability organizations including blind people, people with intellectual disabilities, people with psychosocial disabilities, people with physical disabilities, and little people. For the first time, they had a platform and a target for joint advocacy. The IDA now has a secretariat in New York and in Geneva. In addition to monitoring state compliance with the CRPD, the IDA is involved with all of the UN development organizations for inclusion of people of disabilities.

9.2 Right to Science and the Convention on the Rights of Persons with Disabilities

9.3 Evidence-Based Practices

In order to ensure that the treatments, therapies, rehabilitation techniques, technologies, and other interventions applied to maintain or improve functioning of individuals with disabilities are efficacious, scientific proof of such efficacy is considered the gold standard. Evidence is defined as (Reference Singer, Agran and SpoonerSinger, Agran, and Spooner, 2017, page 63):

Without the use of evidence to validate such interventions, people with disabilities have been subjected to approaches that are the product of poor science, fads, or wishful thinking and that have ultimately proven to be inefficacious. In some instances, the interventions have continued even after the evidence has proved their inefficaciousness conclusively.

Reference Singer, Agran and SpoonerSinger, et al. (2017) assert that the pursuit of unproven practices is the result of “the absence of well-established evidence and an effective interface between scientific researchers and family members and practitioners” (page 67). Examples of the persistence of practices proven over and over not to result in the presumed outcome include Facilitated Communication (FC). According to a review of research on FC, it does not elicit speech from those who previously did not use words to speak via a typing device (American Psychological Association, 2003). The Autism Science Foundation (2019) has denounced a range of unproven treatments for autism including chelation therapy, nutritional supplements, hyperbaric oxygen therapy, secretin injections, and nicotine patch therapy. Patterning is a series of exercises designed to improve the “neurologic organization” of a child’s neurologic impairments and has been used on children with cerebral palsy, Down Syndrome, learning disabilities, and brain injuries. The treatment, according to the American Academy of Pediatrics (1999), is based on an outmoded and oversimplified theory of brain development. Research does not support the claims by proponents that this treatment is efficacious, and its continued use is unwarranted. All of these approaches, though discredited and wasteful, have advocates to this day. While these advocates by and large operate with the best of intentions, they are depriving people with disabilities and their families of the scientific research needed to help them make informed decisions.

9.4 People with Disabilities As Unwitting Scientific Subjects

The use of unproven treatment interventions on people with disabilities seems benign when compared to the multiple instances over decades of people with disabilities being included in scientific experimentation without their knowledge. For instance, in 1949, at Fernald State School (previously the Massachusetts School for the Feeble Minded), seventy-four boys aged ten to seventeen were recruited to join the “Science Club.” They were given special privileges but were also given oatmeal for breakfast with milk laced with radiative tracers. While health dangers were ultimately determined to be minimal (small increase in cancer risk), neither the residents nor their families were given the opportunity to make an informed decision. In another experiment, some of the boys were injected with radioactive calcium. These experiments were approved by the Atomic Energy Commission. Ironically, some of the boys enthusiastically joined the club thinking that the scientists themselves would expose the abuse that went on at the facility (Reference BoissoneaultBoissoneault, 2017).

Additional examples of unwitting victims of experimentation were described in an NBC health posting by Associated Press journalist Mike Reference StobbeStobbe (2011). He described one study that began in 1942 that targeted male subjects who were residents of a state mental hospital in Ypsilanti, Michigan. The study involved injecting the men with an experimental flu vaccine and then exposing them to the flu months later. One of the co-authors was Dr. Jonas Salk who later discovered the polio vaccine. Given their disabilities and lack of cognitive acuity, it was not clear that any of them understood what was being done to them. Stobbe also described a second federally funded study in the 1940s that exposed men from mental hospitals in Middletown and Norwich Connecticut to hepatitis. The scientist was Dr. W. Paul Havens Jr. who was a World Health Organization expert on viral diseases.

Finally, Eric Boodman writing for Stat (2015) described an experiment at a Staten Island School for students with intellectual disabilities. The study, which took place from 1963 to 1966 involved feeding the children human feces in milkshakes. The chief scientist argued that he obtained consent from families, but it was not clear whether the families understood what the experiment involved. The experiment eventually led to the discovery that there were at least two types of hepatitis – Type A and Type B.

Scientists involved in these and other studies that took advantage of vulnerable and cognitively compromised individuals argued that the experiments befitted the greater good. For people with disabilities, the RtS should include an assumption that scientific progress is not achieved at the expense of their human rights such as the right to be free from exploitation, the right to health, and the right to life, liberty, and security.

9.5 People with Disabilities As Participants in Scientific Research

With the slogan, “Nothing About Us Without Us,” people with disabilities have increasingly pressed to be included in discussions about research topics and research methods, and to be included a participant in scientific research projects. This kind of involvement has been described as “participant action research” (PAR). This approach is not limited to people with disabilities but has currency with a range of marginalized groups including minorities, indigenous peoples, and LGBTQ+ communities. With respect to PAR for people with disabilities, Reference Balcazar, Keys, Kaplan and Suarez BalcazarBalcazar, Keys, Kaplan and Suarez Balcazar (2006) noted four characteristics of this research approach (page 1): (1) the active role individuals with disabilities to define, analyze, and solve identified problems; (2) the opportunities for more accurate and authentic analysis of the social reality of people with disabilities; (3) the resulting awareness among people with disabilities about their own resources and strengths; and (4) the opportunities for improving the quality of life of people with disabilities. Stack and Reference Stack and McDonaldMacDonald (2014), following their review of the PAR literature in developmental disabilities, concluded that: “action research with adults with developmental disabilities holds promise for people with developmental disabilities, their allies within and outside the research, community, and a more inclusive society” (page 90).

The Autism community has been particularly aggressive in advocating for inclusion in research efforts specifically aimed at people on the spectrum. They argue that research has traditionally focused on causes or cures for autism and have primarily targeted children, not adults; and men, to the exclusion of women. An analysis of the 2010 National Institutes of Health autism research agenda found that of $217 million devoted to autism research in that year, only 1.5 percent of the funds went towards research on the needs of autistic adults while only 2.45 percent went towards research on the service-needs of people on the autism spectrum across the lifespan (Autism Self Advocacy Network, 2012; Office of Autism Research Coordination IACC Portfolio Analysis Web Tool, 2012). The Autistic Self-Advocacy Network has argued that people with autism should be included in determining research priorities in order to ensure that topics of concern to the community are addressed including communication strategies, building relationships, employment support, and strategies to manage their support and services.

In addition to the importance of involving people with disabilities in determining research priorities that affect their lives, it is also important to ensure the people with disabilities are included as subjects in longitudinal health and drug trials. People with disabilities have historically been left out of such studies. Without their participation, the results of these important studies will not include important information about any idiosyncratic disease markers and drug interactions affecting people with disabilities. Maya Satabello (2018) makes the case that such inclusion is of particular importance to the growing field of precision medicine that involves treatment initiatives that target the particular genome of individuals or groups of individuals relative to specific health conditions. She makes that point that if people with disabilities are not intentionally included, any scientific advances may be limited and health disparities for this population will be exacerbated.

9.6 Big Data and Artificial Intelligence Digital Divide

9.7 Conclusion

This discussion of the application of the right to science to people with disabilities is not meant to be exhaustive but hopefully highlights the complexity and interrelationship of the issues involved. Science and the products of science are critical to the realization of the human rights of people with disabilities and to their inclusion in society. However, the conduct of science also poses challenges and obstacles to people with disabilities when they are excluded from decisions about scientific priorities, the conduct of scientific research, and the design of technology. The following are some brief recommendations aimed at increasing awareness in the general public and the scientific community regarding the needs and aspirations of a critical segment of the global population:

• Introduce disability issues into engineering and other curricula to ensure that product development includes access considerations.

• Include people with disabilities in design decisions for products, equipment, clinical approaches and other scientific endeavors that will affect their inclusion in their communities and their ability to manage their own lives.

• Support evidence-based practices normed on disability populations.

• Include people with disabilities in data used to identify markers for specific illnesses.

• Explore informed consent policies for people with intellectual disabilities in order to ensure that they are neither exploited nor excluded from scientific studies.

• In developing nations with few resources, prioritize low cost solutions.

• Include access to science as part of international monitoring of the CRPD by the Special Rapporteur and the Committee on the Rights of People with Disabilities.

• Develop longitudinal surveys to track the well-being of people with disabilities and to identify gaps in their access to science-based supports.

10.1 Introduction

The post–World War II world has seen huge progress in scientific research. The generators have been large-scale projects funded by national governments, big business and global corporations, individual talent, and initiatives creating thousands of technology spin-offs and innovative start-ups. The role of organized knowledge in society has never been more important and the impact of STEM (Science, Technologies, Engineering, Mathematics) on people’s everyday lives is growing. New scientific and technological fields as diverse as biotechnology and nanotechnology, gene therapy and pharmacogenomics, membrane technology, neural computing, nanotechnology, and ICTs in general are creating a basis for a society in which the “creation, dissemination, and utilization of information and knowledge has become the most important factor of production.”Footnote ¹

Consequently, the quantity and quality of scientific inputs and outputs, as measured by the Nature Science Index,Footnote ² have increased. Applied science is flourishing. Its outputs are tangible and evident in the areas of science, technology development, and innovation (STDI), as measured by the Global Innovation Index.Footnote ³ IBM researchers estimate that 90 percent of the world’s data have been created in the last two years: more data than was created in the entire previous history of the human race.Footnote ⁴

For the first time in the history of science, including the history of data science itself, we are witnessing a paramount attempt to integrate all existing and possible sources of data, information, and knowledge, to confront a single phenomenon: the SARS-CoV-2 pandemic.

The long-lasting linear growth of science and its impact on societies beginning in the aftermath of WWII received a major structural blow on January 7, 2020, in the city of Wuhan. Public health authorities identified a novel coronavirus. Wuhan was placed under quarantine within days and, on January 31, the World Health Organization declared a public health emergency.

The figuresFootnote ⁵ of more than 130 million cases and more than 2.8 million deaths globally convey neither the inevitable final death toll and suffering, nor the overall effect of COVID-19 on mortality. The Institute for Health Metrics and Evaluation (IHME) projection, that was based on current projections scenario, by July 1, 2021 we will see 4,4 millions COVID-19 deaths globallyFootnote ⁶ The broader disruption caused by COVID-19 could result in many additional deaths that are not directly attributable to the spread of the virus. Declines in households’ economic wellbeing and changes of prioritization in access to health services for non-COVID illnesses will cause many additional deaths yet to be recorded. Credible and reliable estimates of the overall effect of the COVID-19 epidemic on health outcomes will not be available before the end of the year 2021Footnote ⁷. and long-lasting problems from COVID-19 make it even more important to reduce the spread of the diseaseFootnote ⁸.

As the SARS-CoV-2 virus started to spread in humans and the COVID-19 epidemics/pandemics emerged, global society rapidly experienced a deluge of controversial if not contradictory data concerning scientific facts, governmental evidence-based policies, as well as health and security intelligence.Footnote ⁹ In a global pandemic situation, data are an essential tool for making decisions concerning the allocation of resources as well as for measuring the effectiveness of interventions. Many significant and basic facts about COVID-19 are still missing, including the most important one: how many people have been infected so far? Without reliable virological testing data, we cannot develop epidemiological projections and models accurately.Footnote ¹⁰ Without having exact data on the total number of people infected we also cannot precisely calculate the case-fatality rate (CFR) (the percentage of patients with the disease (cases) who die from the condition), which likely ranges widely with covariates.

This is an important problem. Knowing the number of deaths during a period of the pandemic is not enough. Moreover, in many cases, we cannot even rely on simple and standard measures such as the mortality rate which countries are reporting to the World Health Organization. We need these measures to calculate excess deaths/excess mortality rates. These rates compare the number of deaths during a period of the pandemic with the average number of deaths during the same period in previous years, thus unmasking potential hidden effects.Footnote ¹¹.Footnote ¹² Thus, in the period between 26 January and 3 October 2020, the US registered 360,000 deaths in excess of the five-year average,Footnote ¹³ of which 209,000 cases were confirmed to be due to COVID-19. The same trend applied for all G-8 countries, although following a different cycles, different seasonal patterns and strong difference in intensity.

Figure 10.1 Excess mortality during COVID-19 Pandemic: Deaths from all causes compared to previous year, all ages in G-8 Countries

Not all excess deaths should be directly attributed to the COVID-19 pandemic. Lives will be lost because of interactions with other illnesses, the necessary reduction in the quality and magnitude of medical care for everyone else implied by the vast resource drain of COVID-19, as well as factors such as domestic violence. These facts stress the importance of the distinction between death “with” or “from” COVID-19.

Notwithstanding the profound uncertainty and questionable credibility of the available data, specific numbers and statistics are being presented by scientists, the media, and governments with the appearance of conviction and certitude. However, incomplete or incorrect data may create or contribute to false senses of security, or alternatively to anxiety and even social hysteria. Far-fetched, exaggerated or manipulated information derived from questionable data have already generated serious scientific and policy mistakes in relation to the appropriate separation and restriction of movement of individuals exposed to a contagious disease (sc. quarantine, self-quarantine, and isolation.) Such measures, as well as their society-wide analogues of lockdown and social distancing, are known from previous experience to be the single most effective set of public health measures. By “flattening the curve,” these tried-and-tested methods reduce the burden incumbent on healthcare systems at any specific time point, thereby preventing the most serious collateral iatrogenic damage resulting from the pressure on overburdened and under-resourced medical staff and facilities. However, without reliable data specifically relevant to the COVID-19 pandemic, efficacious and evidence-based social distancing policies cannot be established, but must rather be approximated. The severity of the ethical implications of this lack of data integrity and availability may be appreciated by considering their direct translatability into lives not saved, avoidable illnesses, and unnecessary public resource drainage.

This chapter demonstrates the utility and validity of applying a human rights lens to topical and important issues in science and society through an in-depth case study of the current SARS-COVID-2 pandemic. After setting out the relevant background, recent developments in the scientific fight against the pandemic are considered in light of the provisions of Article 15 ICESCR and 27 UDHR, which enshrine the human right to enjoy the benefits of scientific progress and its applications. This right is relevant to several aspects of the scientific process, from funding, data acquisition, hypothesis selection and experimentation all the way through to publication, knowledge sharing and the implementation of resulting knowledge in the spheres of policy and technology.Footnote ¹⁴

The second half of the chapter focuses on a highly pertinent yet little-discussed dimension of scientific research: the speed at which it is conducted. The analysis proceeds by way of analogy to the central thesis of Nobel Laureate Daniel Kahneman’s summary of decades of research into heuristics and biases, Thinking, Fast and Slow.Footnote ¹⁵ It is suggested that the dichotomy between a “fast,” instinctive and affective cognitive process and its “slow,” logical, and deliberative counterpart also accurately characterizes two idealized, diametrically opposed and extreme approaches to the scientific process. Nowhere is this distinction of greater practical significance than in the contemporary response to the SARS-CoV-2 pandemic.

The ongoing threat to human life and progress, the constant attention from the media and the public, as well as the possibility of glory for major advances, all affect scientists and their work. While this enables practical cooperation and reduces the timeframe for possible breakthroughs to such an extent as to offer hope to individuals currently suffering under the burden of the disease, these same factors likely introduce the very heuristics and biases that the scientific method is supposed to rule out or minimize. From an abstract, collective and long-term perspective, nothing beats “slow,” curiosity-driven and methodologically unimpeachable research based on a rigorous understanding of the scientific method. Yet the price paid for greater certainty is greater latency, and in the case of the SARS-CoV-2 pandemic, time is already running short for hundreds of thousands of infected individuals.

Building on this discussion, the importance of trust in science and in evidence are underlined, and the argument advanced that the “right to science lens” provides a useful framework for identifying the elements necessary for such trust, and offers guidance as to how it is best achieved. We argue that this can be seen in practice through a comparison of the disparate impact of the virus in different countries. We suggest three broad factors which may account for much of this difference: the presence of scientifically informed leadership with respect for slow science and methodological rigor; societal trust in both science and in political and public health leadership; and a lower degree of income and wealth inequality. The RtS, as elucidated in the Committee on Economic, Social, and Cultural Rights’ authoritative General Comment No. 25 (2020),Footnote ¹⁶ which in turn relies on relevant provisions of the 2017 UNESCO Statement on Science and Scientific Researchers,Footnote ¹⁷ and elsewhere in this volume, provides useful and workable guidance as to how the development of these factors can be encouraged.

10.2 Societies and Science: the Good, the Bad, and the Ugly

In Blueprint: The Evolutionary Origins of a Good Society,Footnote ¹⁸ Nicholas M. Christakis has collected rich evidence from various disciplines to show that historically, whole scientific fields have focused on the dark side of our biological heritage. “In other words, we humans can be awful – prone to selfishness, tribalism, hatred, and violence,” writes Christakis. “But, equally, we are good, prone to love, friendship, cooperation, and teaching … we evolved these capacities, and the good must necessarily have outweighed the bad, in order for us to live as a social species.”Footnote ¹⁹ It is therefore important not to forget the “human” in “human rights.”

“Because [science] is a discipline given to objective fact-finding addressed by hypotheses and using inductive methodologies, it appears by its reliance on empiricism to exclude all consideration of value-laden issues,” wrote Richard Pierre Claude, one of the first and foremost commentators on the right to science. “Whether this view stands up to scrutiny or not, it remains obvious that science is a discipline pursued by human beings.”Footnote ²⁰ One implication is that the mixed traits Christakis identifies as hallmarks of the human experience – selfishness and tribalism, but also cooperation, teaching and friendship – may influence the motivation and conduct of scientists and through their actions eventually shape the content, quality, and focus of scientific debate and progress.

In the second part of this chapter, we suggest this dynamic is visible in the context of scholarship on the SARS-CoV-2 pandemic. The desire to produce helpful and useful science, which falls squarely within the “good” part of human nature, motivates meticulous adherence to procedures and protocols designed to maximize scientific validity and minimizes any possibility of harm. Science carried out in this way may be termed “slow” science. The desire to help those who are suffering now may tempt less scrupulous scientists to rush publication and cut methodological corners, however. Likewise, the prospect of honor, fame and professional recognition that follow major breakthroughs, perhaps combined with a fear of being scooped, may subconsciously influence even the most methodical and meticulous scientists, editors, and commentators. Where these kinds of motivations significantly influence methodology, we might speak of “fast” science.

The choice or balance between fast and slow science has serious consequences for the fulfillment of the human right to enjoy the benefits of scientific progress and its applications. Indeed, much of the normative content of the right to science aims at preventing the kinds of extraneous influences on scientific method, which characterize fast science. The following section sets the stage for the analysis of fast and slow science by exploring the elements of the right to science in the context of ongoing efforts to combat the SARS-CoV-2 virus. It begins by examining several positive factors, including the high degree of international scientific cooperation, medical altruism, and funding available for scientific research, which represent the “good” in human nature and scientific conduct. In contrast, the disproportionate impact of the pandemic on the already disadvantaged, as well as the evidence of disparate treatment and outright racial discrimination, demonstrate the reality of “bad” factors. Finally, the worldwide reliance on data for scientific progress in general, and on location and contact tracing for COVID-19 positive individuals in particular, renders data science particularly susceptible to dual-use concerns. Where these concerns are warranted, the likely negative impacts are so widespread and so invasive that we may speak of truly repugnant or “ugly” effects.

10.3 The Good: Science As a Public Good

Human rights, and in particular the right to science, are not only a fundamental human value and a normative imperative for good society. As recognized in paragraph 8 of the CESCR’s General Comment No. 25, the benefits of science extend beyond the “material results of the applications of scientific research” to include “the scientific knowledge and information directly deriving from scientific activity” as well as “science’s role in forming critical and responsible citizens who are able to participate fully in a democratic society.”Footnote ²¹

When integrated into basic societal rules and principles, human rights are strong generators of economic development, social progress, and international cooperation and assistance. We visualize this relationship below using comparative data connecting human rights protection scores and GDP per capita. The countries included in the analysis are G-7 member states plus Russia, Brazil and the country with the lowest relative number of cases and 0 deaths – the best overall success in controlling the pandemic.

The “good” of state investment in human rights-relevant factors may be exemplified at the level of international governmental aid. The US State Department and USAID are the largest donors globally, providing nearly $274 million in annual emergency health and humanitarian assistance to countries in need, in addition to funding already provided to multilateral organizations such as the World Health OrganizationFootnote ²² and UNICEF.Footnote ²³ In the context of the current pandemic, there are several examples of collaborative and altruistic State behavior. For example, the German university hospital in Essen-Holsterhausen has admitted COVID-19 patients from France; Albania has issued a group of thirty doctors and nurses to neighboring Italy; and France has responded forcefully to the need for more blood donations. The Chinese corporation Alibaba has donated 500,000 test kits and one million face masks to the US, and several Japanese clothing manufacturers and retailers have donated another million protective face masks to American hospitals.Footnote ²⁴

Figure 10.2 Human Rights Score vs. GDP per capita 1990–2017. “The ‘Human Rights Score’ aims to measure how a government protects its citizens’ physical integrity, by taking into account torture, government killing, political imprisonment, extrajudicial executions, mass killings and disappearances”.

Sources: World Bank, Schnakenberg and Fariss (2014) Fariss (2019). OurWorldData.org/cascade-or-rights/

Such examples of altruistic and collaborative behavior cannot erase the fact, however, that most of the benefits of scientific progress and its applications are unequally distributed. As scientific knowledge has become a crucial factor in the production of wealth, its international distribution has become steadily more inequitable. This is due to structural asymmetries among countries, regions and social groups, and between races and the sexes. What distinguishes poor people or underdeveloped countries from their richer counterparts is not only that they control fewer assets, but also that they do not create, shape, and enjoy as many benefits of scientific knowledge.Footnote ²⁵

This reality demonstrates the importance of international cooperation, an essential element of the right to science. Article 15(4) ICESCR states that, “[t]he States Parties to the present Covenant recognize the benefits to be derived from the encouragement and development of international contacts and co-operation in the scientific and cultural fields”.Footnote ²⁶ Moreover, it illustrates importance of scientific freedom, another essential element recognized in Article 15(3). Without scientific freedom, the safe exchange of medical personnel, technological equipment, and scientific knowledge cannot be guaranteed.

Several steps have already been taken to curb the Coronavirus pandemic. These involve controlling and changing human behavior; searching for drugs and testing vaccines; stimulating the economy,; and creating datasets and collecting information from sources as diverse as those about population genetic and public health, traffic controls, and GPS signals, social media sites, purchase transaction records, as well as the climate. In the face of the pandemic, science has been recognized as the strongest and most legitimate instrument to pursue the ideals of a safer life and improved overall human conditions.

This promise of science is, however, conditional on the broad distribution of scientific information and the growth and dissemination of evidence-based knowledge (cf. ICESCR Article 15(2)).Footnote ²⁷ Scientists are expected to search for drug therapies and vaccines and deliver solutions under unprecedented time pressure, potentially undermining these conditions.Footnote ²⁸

10.4 The Bad: Inequality and Access to Science

As the ability to manipulate abstractions and data becomes ever more important for the attainment of societal ends, we should remember that a knowledge society is not necessarily a good society.Footnote ²⁹ Neoclassical economic theory equates development with GDP growth that can be measured through the lens of an aggregate production function, relating “relates the total output of an economy to the aggregate amounts of labour, human capital and physical capital in the economy, and some simple measure of the level of technology in the economy as a whole.”Footnote ³⁰ This model fails to provide an adequate picture even of economic development, as it entirely ignores externalities including, but not limited to, social costs, environmental impacts, and income inequality.Footnote ³¹

It is not surprising that such an approach to society at times creates fear and reluctance to adopt new technologies. Much of the current inequality both within and between societies can be traced to technical innovations introduced at first to benefit only a privileged minority.Footnote ³² These are partially to blame for the creation of a global society in which, according to a Pew Research Center analysis, the vast majority of the world’s population (4.4 billion people – 71% of the global population of 6.2 billion) lives on a budget that falls well short of the poverty line in advanced economies Footnote ³³.Footnote ³⁴ The most recently available data analysis finds that the global middle class encompassed 54 million fewer people in 2020 than the number projected prior to the onset of the pandemic and the number of poor is estimated to have been 131 million higher because of the recessionFootnote ³⁵.

Since socioeconomic determinants such as education and poverty are deeply interrelated with health, this stark inequality will be exacerbated as the COVID-19 pandemic plunges the global economy into a synchronized recession the likes of which has not been witnessed since the Great Depression. The rise in the number of people infected by COVID-19 in Africa and South Asia, for example, is creating new economic and social shocks that threaten to deepen global inequalities, especially affecting the people living in rural areas or overcrowded megalopolises lacking access to basic health and social services.Footnote ³⁶

Where the obligations imposed on States under the right to science have been met, societies are better prepared for the type of emergency responses necessary in a global pandemic, including effective means of tracing, testing, and quarantining. Article 2 ICESCR provides that

Moreover, “maximum available resources”Footnote ³⁸ should be understood to include resources available through international cooperation. Where countries have not met this standard despite good faith attempts to comply with their duty of progressive realization for reasons of resource scarcity, it is frequently the international community’s failure to live up to their own obligations which is to blame.

Over the course of the last two decades, developmental economists have attempted to build alternative growth models responsive to the fact that some people are more favored by their legislators and governments than others are. Adherents of the “Unified Growth Theory,” for example, have expounded important theoretical perspectives and breakthroughs by studying the interplay between growth and politicalFootnote ³⁹ as well as social institutions.Footnote ⁴⁰ The new conception of economy envisaged is a global view of systems of production that have fundamental implications for our everyday material and mental reality.Footnote ⁴¹ Unified Growth Theory was designed to resolve the conflict between growth designed to satisfy the interests of profit and the interests of the majority of the population.Footnote ⁴²

Figure 10.3 The worsening economic outlook following the emergence of COVID-19 entails an increase of over three percentage points in LDC poverty headcount, with more than 33 million additional people living in extreme poverty.

Source: https://unctad.org/en/pages/newsdetails.aspx?OriginalVersionID=2356

10.5 The Bad II: Discrimination

Human Rights Watch has identified forty questions to guide a rights-respecting response to the COVID-19 crisis. These principally target the needs of groups most at risk, including people living as ethnic minorities and/or refugees, religious groups, elderly and disabled people,Footnote ⁴³ children and women, and members of the LGTBQ+ community.Footnote ⁴⁴ Racially discriminatory treatments related to the COVID-19 pandemic have occurred repeatedly around the world. There have been reports of discrimination in employment and housing directed at Africans and people of African descent throughout China, and attempts were made to forcibly test Africans in the Guangdong province.Footnote ⁴⁵ A significant increase of racist incidents against Asian Australians has been recorded in Australia, ranging from racial slurs to physical assault committed against women (62 percent).Footnote ⁴⁶ Racial discrimination also plays a part in the pattern of victim-blaming that occurs when inequality widens for communities of color. An exclusive focus on individuals’ risky behavior is typically adopted, trivializing the importance of socioeconomic determinants of health in the interpretation of the high mortality rates among people of color.

Analysis of the death toll of COVID-19 furthermore reveals that the poor, uninsured, and members of minority groups are the most affected. The rate of COVID-19-related deaths among Black and Latino residents of Chicago and New York is more than twice the Caucasians rate. Similar highly disproportionate rates are measured in other densely populated cities and neighborhoods in the USA.Footnote ⁴⁷ The need to take public transportation to get to work and/or the presence of pre-existing health problems radically increase exposure to the virus and are necessarily related to socioeconomic status. This is not specific to the USA. In the United Kingdom, black males are 4.2 times and black females 4.3 times more likely to die from a COVID-19-related death than Caucasians.Footnote ⁴⁸

These disproportionate burdens on already marginalized groups are a particularly egregious violation of the basic human rights principles which underlie the right to science. Unlike the duty of progressive realization, which applies to most obligations derived from this right, there are no excuses under international human rights law for allowing such discrimination to happen. Article 2(2) ICESCR is clear on this point: “The States Parties to the present Covenant undertake to guarantee that the rights enunciated in the present Covenant will be exercised without discrimination of any kind as to race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.”Footnote ⁴⁹ The CESCR’s General Comment No. 25 reminds us that “States Parties are under an immediate obligation to eliminate all forms of discrimination against individuals and groups in their enjoyment of ESCRs.”Footnote ⁵⁰ The obligation to remedy discrimination is absolute, cannot be limited, and obtains even in emergencies and situations involving the total destitution of the State.

One implication is that States Parties must address socioeconomic determinants of exposure. This can happen, for example, by establishing temporary, less crowded institutions (care homes, prisons, schools) or by providing financial incentives not to commute using public transportation (i.e. furlough programs and programs enabling those most in need to stay at home altogether without losing their jobs by subsiding their employers). States could disseminate evidence-based advice on social distancing, hygiene and personal protective equipment, especially among those most in need and least able to otherwise obtain it.

10.6 The Ugly: Dual Use, Harm, Coronavirus Capitalism, and the Dignity of the Individual

A major menace to scientific freedom arises from the interaction between digital technologies and capitalism – specifically, the threat of “surveillance capitalism.”Footnote ⁵¹ This mutant strain of capitalism works by providing free services to citizens in exchange for their personal data, enabling services providers to monitor users’ online behaviour with or without their explicit consent.

Why has surveillance capitalism been so successful over the last decade or so? In part, it is because we have lost support from our real-world institutions:

Coronavirus Capitalism is an even newer term coined to cover a broader set of structural changes resulting from the pandemic.Footnote ⁵⁴ The analogy of “surveillance capitalism” is applicable to the role of digital technologies in the context of the COVID-19 pandemic: technologies employed by governments around the world are aimed at identifying how infected people behave, where they move, with whom they socialize, but not only for the purpose of monitoring self-isolation or enforcing quarantines. Governments are demanding extraordinary new surveillance powersFootnote ⁵⁵ intended to contain the virus’ spread.

Significant problems related to data security may arise from private corporations storing large quantities of consumers’ personal data. Instead of looking to invest their resources in boosting testing, unchecked power-seeking governments might end up using the COVID-19 surveillance technologies to normalize data gathering on individuals for the purpose of social and political control.Footnote ⁵⁶ This prospect would not comply with the European Data Protection Board (EDPB)’s guidelines, which state that restrictions of freedom during the pandemic are acceptable only to the extent that they are consistent with narrowly defined purposes, limited timeframes, and the recommendation that “pseudonymisation, encryption, non-disclosure agreements and strict access role distribution, access role restrictions as well as access logs should be employed.”Footnote ⁵⁷

For example, machine-readable QR codes, which are typically used to store URLs or other information to be scanned by smartphone cameras, have been used to monitor citizens and alert authorities about the movements and actions of individuals who have tested positive for SARS-CoV-2 in China, Russia, and Hong Kong. Closed-circuit television has been deployed to track such individuals in South Korea. In Israel, citizens’ cell phone location data are used for quarantine control purposes by the governmentFootnote ⁵⁸.

The EU currently proposes to track citizens using Bluetooth. Computer science and machine learning experts from eight European nations are developing the Pan-European Privacy-Preserving Proximity Tracing Project,Footnote ⁵⁹ which aims to enable technologies to alert users to the presence of nearby individuals who have tested positive for the virus. Moreover, the Massachusetts Institute of Technology is developing new platforms using existing mobile technologies to enable privacy-preserving contact tracing. The aim of these platforms is to enable health care providers to download the names of those who have been physically close to infected individuals. Algorithms developed by data scientists will furthermore be able to integrate data from different sources to forecast precise community-level infection risks.Footnote ⁶⁰ All these examples are the result of the theory that the interest of public health prevails over privacy rights and interests when the demand for processing sensitive private information increases due to severe threatsFootnote ⁶¹ to survival among the general population.

The Joint Civil Society Statement, issued by more than one hundred national and international civil society organizations, “urge[s] governments to show leadership in tackling the pandemic in a way that ensures that the use of digital technologies to track and monitor individuals and populations are carried out strictly in line with human rights.”Footnote ⁶² Proposals that would invade privacy, deter free speech, and disparately burden vulnerable groups are not acceptable, the Electronic Frontier Foundation argues, and suggests three questions to be answered in every situation when decisions are being made to give greater surveillance powers to the government:

1. 1) Would the proposal work?

2. 2) Would it excessively intrude on privacy and freedoms?

3. 3) Are there sufficient safeguards?Footnote ⁶³

These misgivings show that the kind of surveillance characterizing Coronavirus Capitalism is liable to misuse. The problem is familiar from pre-Corona contexts, but the emergency powers sought by governments to combat COVID-19 are more extensive and invasive. The problem arises from the fact that the same technologies – surveillance, tracking and tracing, identification, and contact using ICTs – which are capable of producing vast benefits (as the case of successful contact tracing in South Korea shows) are also capable of producing great harm through bad faith, selfish or even hostile uses. In the case of invasive individual surveillance, it is not hard to see that a wealth of information concerning individuals may be connected, amassed and analyzed. Nor is it difficult to appreciate that much of this information is likely to be sensitive and may give rise to neglect, discrimination, or even persecution, for data subjects, as well as unjust enrichment and undemocratic influence for those who wield the power of the resulting knowledge. Given the sheer scale of data involved, and the ease with which systems meant for emergencies may be repurposed for continued use, the danger of dual use may well be one of the ugliest problems currently facing societies.

The problem of dual-use surveillance also raises the issue of respect for human dignity. Dignity has a special meaning in international human rights law, where it serves as the foundational value from which human rights are derived.Footnote ⁶⁴ Although a detailed definition is outside the scope of this chapter, dignity may be said to involve respect for individual autonomy and desires, balanced against interference with those of others, and entitlement to acknowledgement and respect as an agent whose life and interests have inherent value. Thus, dignity is violated whenever individuals are treated merely as tools or objects for the achievement of some purpose. Such treatment respects neither the equal rights of all humans nor their cognitive and affective capacities. The constellation of nonconsensual and exploitative practices which make up Coronavirus Capitalism not only undermine the interests of individuals to maintain the privacy necessary for self-development and the cultivation of relationships; they also fail to offer a reasonable degree of informational freedom.

10.7 The Ugly II: Executive Distrust of Science

Not every country has reacted in the same manner during the pandemic, with the same level of ethical, social, and scientific responsibility, transparency, and evidence-based policies. Indeed, there are already indicators of significant differences in the transfer of knowledge and use of evidence-based policy between the highly developed EU countries as well as the USA. Whether members of high-risk groups, such as the elderly and people with preconditions, will live or die depends on the response of world leaders to the idea of evidence-based policy and the right to enjoy the benefits of scientific progress. Politics of denial and limited public access to evidence-based information and independent scientific sources on the virus’s spread have already contributed to the loss of hundreds of thousands of lives. In some countries, responses from heads of state have been marked by distrust of science, cover-ups, and ad hominem attacks on doctors who sounded the alarm at the beginning of the outbreak. There have been “predictions” that the virus would disappear like a miracle one day and dismissals of the disease as a hoax fantasy and a little flu.Footnote ⁶⁵ Manipulation, exaggeration and conspiracy theories on the origins of SARS-Cov-2 are rampant, spreading faster than the virus and likewise producing deadly effects. Some of the most widespread are that:

• The virus has escaped from a Chinese laboratory in Wuhan

• The US military brought the virus to Wuhan

• 5G networks spread the virus

• The virus was created by Bill Gates who wants to make billions on the vaccine.

Social scientists are trying to chart the path of disinformation in the same way that epidemiologists are tracking the transmission of a new virus, with a special focus on so-called “superspreaders” whose actions cause significantly more viral dissemination than others.Footnote ⁶⁶ Some politicians have held political rallies, kissing supporters and promoting an aversion to scientific inquiry and public health institutions. One aspect of populist manipulation of reports and official figures, which has puzzled researchers, is the reported mortality rate in many countries being far below those measured, expected, or projected for comparable economies, societies or health care systems. For example, Russia is positioned in upper tier of the Europe region in terms of number tests per million population( 830 926 tests / 1 million people – 121 300 000 tests in total while Denmark leads the way with 4 476 378 tests / 1 million people – 25 996 859 tests in total) However, Russia is standing, as of this writing, at 4,5 million reported cases and 99.000 deaths, resulting in relatively low 31,258 cases per million, Footnote ⁶⁷ and even lower level of deaths per million if compared to most of G-8 average, (Russia reports 683 deaths per million compared to UK reporting 1861 deaths per million, Italy, 1827, USA 1705, Germany 921)Footnote ⁶⁸ . This is a country with an underfunded and vertically disconnected health care system, and in which no satisfactory explanations for such superior performance are obvious.

Though fairly common, national responses aimed at obscuring the true extent of the virus’s impact, constitute clear and fundamental violations of no less than three of the core minimal obligations of the right to science. The CESCR explicitly provides, in paragraph 52 of its General Comment No. 25, that the following obligations are “core,” such that no government may be excused for failing to fulfil them unless they demonstrate exhaustion of available domestic and international resources in bona fide attempts at fulfillment (paragraph 51).

10.8 Science: Fast and Slow

Unfortunately, a rigorous approach to scientific method is a slow and ponderous process. Trials must adhere to strict safety and statistical standards. They have to obtain ethical review. Their results need to be confirmed by other trials and discussed in open scientific fora. Before they can be published, they typically undergo peer review. As a result, the scientific process operates on a temporal resolution of years and decades. Yet the Coronavirus cannot be persuaded to wait, and thousands need a cure, vaccine or treatment now. As a result, the natural, social and behavioral sciences are all under great pressure to answer difficult questions quickly. Whether consciously or subconsciously, methodological niceties and research credibility may be sacrificed or neglected in the process, leaving research or policy papers open to criticism.

A good example is the statistical bias which arises from attempts to understand the share of people who have contracted the coronavirus. Basic but fatal problems arise from the misinterpretation and miscalculation of epidemiological concepts. The second most important cause of bias is that a key metric, the number of deaths caused by coronaviruses, tends to lag. Although many regions publish daily death counts, these are typically underestimates and suffer from unrepresentative sampling and daily variability. The sampling-variability issue is exacerbated by the fact that polls or studies with extreme results are more likely to get reported on (“publication bias”).Footnote ⁷⁰

Consequently, we cannot rely completely on the data that partly inform the 500+ research papers on COVID-19 published daily. The primary cause for this explosion in publications is the adoption of new scientific practices, stimulating scientists to share pre-print research directly online, without formal peer-review. These new practices have engendered a fair amount of skepticism. Like fast food, hastily compiled junk scienceFootnote ⁷¹ can be deleterious for health. Conflicts and mixed messages among scientists are symptomatic of a rushed approach and have stymied efforts to tackle the most pressing issues.Footnote ⁷²

The scientific knowledge and individual and collective experience we are amassing over the course of the SARS-CoV-2 pandemic will be the basis for the knowledge of tomorrow. Ideally, this knowledge and experience will inform the creation of new tools and techniques which in turn will help us collectively control future epidemics. Some will argue that the conduct of the scientific process – from generating hypotheses to designing research and evaluating hypotheses – should be a value-neutral exercise. However, conducting science in accordance with the requirements of the eponymous right means engaging with the concerns of the public, rather than shutting these out. In the words of Isabelle Stengers, scientists ought to behave like the

The sometimes completely unrealistic societal expectations from science and technologies are vividly illustrated by the current pandemic.Footnote ⁷⁴ The biomedical research pipeline begins with rigorous safety checks on small experimental groups during Phase 1; expands to groups of a few hundred in Phase 2; thousands in Phase 3; and only then may Phase 4 trials be initiated. Months normally pass between phases so that researchers can review the findings and obtain approval to proceed to subsequent phases; the process of bringing novel pharmaceuticals can thus extend over years or decades. Since 1992, the US Food and Drug Administration’s development and drug approval standards and procedures include a track for the accelerated approval of antiretroviral drugs. Originating from the need to enable rapid access to HIV/AIDS medication, the FDA’s accelerated approval track can be “applied to promising therapies that treat a serious or life-threatening condition and provide therapeutic benefit over available therapies.”Footnote ⁷⁵ The influence of the “fast” process can be illustrated by reference to the incredible statistic that nearly 30,000 of the COVID-19 articles published in 2020 were preprints — between 17% and 30% of total COVID-19 research papers Journals rushed to get COVID-19 articles through peer review. MedRxiv COVID-19 preprints appeared in peer-reviewed journals after a median review time of 72 days, twice as fast as preprints from the server on other topicsFootnote ⁷⁶. The US National Library of Medicine’s trial registry, ClinicalTrials.gov, presently records 5.248 ongoing or completed COVID-19 studies. The number of studies already recruiting patients is exceptional, at 2562 current studies.Footnote ⁷⁷ This pace is unprecedented in the history of science and medicine. Nevertheless, both the SARS-CoV-2 virus and the resultant COVID-19 disease are novel biological phenomena. Despite the fact that there only few vaccines for COVID-19 approved by either the FDAFootnote ⁷⁸ or the European Medicines Agency (EMA),Footnote ⁷⁹ unscrupulous companies are attempting to profit from the pandemic through illegally marketed and scientifically untested products falsely claimed to be efficacious against the disease.

A famous example of this phenomenon is hydroxychloroquine, a sometime anti-malarial drug publicly promoted by US President TrumpFootnote ⁸⁰. This drug was the subject of two major papers published in The Lancet and New England Journal of Medicine, the premier medical journals of the United Kingdom and US, respectively. The studies were both based on a database purportedly derived from the medical records of 96,000 COVID-19 patients. Their publication “had considerable impact, halting clinical trials of malaria drugs around the world and providing reassurance about the risks of blood pressure medications taken by millions of patients.”Footnote ⁸¹

Based on suspicions about the source and accuracy of this database, more than a hundred academics signed an open letter to the editor of The Lancet requesting an independent validation of the study and details of the supporting evidence.Footnote ⁸² Both studies were subsequently retracted when it emerged that Surgisphere Corporation, the proprietors of the database, had refused access to its full contents to independent reviewers.Footnote ⁸³ Under normal circumstances, the editorial and research standards in these journals is so high that retractions or allegations of serious mistakes or omissions are rare, especially in cases of studies, such as these two, authored by senior professionals from prestigious institutions. They would take months or years to conduct and go through multiple rounds of analysis and review. However, these studies went through the entire research pipeline from data analysis through submission to publication in little over five weeks. To the extent that such a hastily crafted paper would be unlikely to pass editorial and peer review in less pressured times, this story illustrates the impact that the “fast” process can exert, even in the best medical journals.

The difficult history of HIV treatment and the deployment of vaccines against the H1N1 outbreak in 2009 illustrate that even when tools have been available, they have not been equally available to all. In the long run, therapeutic drugs, together with vaccines, might change the fight against COVID-19 too.Footnote ⁸⁴ One potential source of such optimistic and promising vaccine-development is that such “speculations” have caused the stocks of companies developing vaccines to surge and more than double since late February, despite some of these companies having never successfully brought a single product to market. For politicians, it is an attempt to invest in the potential surge of public support ahead of elections. Developing such huge expectations from science may be wreaking potentially serious damage to the reputation and credibility of science as a source of knowledge, directly undermining the principles underlying the right to science.

10.9 Discussion: the Importance of Trust in Science and Evidence and How to Build It

The global spread of the SARS-CoV-2 virus and COVID-19 pandemic is an unexpected opportunity to see the principles of the right to science, and the effects of their absence, in action. It is also an opportunity to measure the quality and the pace of the implementation of scientific and applied science recommendations found in the ICESCR, General Comment No. 25, and the 2017 UNESCO Statement on Science and Scientific Researchers, which is the source of several of the normative definitions of terms used by the CESCR in its General Comment.

Figure 10.4 The relation between rate of deaths, SARS-CoV-2 testing frequency and expenditures on health per capita in the G-8 countries as compared to Vietnam – the most successful country in managing COVID/19 pandemics.

Source: author’s composite from various databases.

Figure 10.4 shows that only two countries among the most affected developed countries have experienced relatively positive outcomes of their attempts at prevention and viral control. Japan and Germany were well prepared, highly organized, and exceptionally effective with respect to prevention and tertiary intervention policies. Germany has since led the way in Europe with large-scale testing for COVID-19, collecting more than 50 million samples (600 per million) since the start of the crisis. Although the country as of the time of writing ranks seventh globally for the number of confirmed cases – exceeding 2.9, million infections (34.144 per million) – the fatality rate is much lower than those of other developed countries at 921 deaths per million. Japan represents an even more interesting and successful case with close to 500.000 infection cases (3.784 per million) and 9.195 deaths (73 deaths per million) so far recorded.

Among non-Western countries, success stories in handling the novel coronavirus outbreak include only highly developed countries such as South Korea, Taiwan and Hong Kong. However, there is one exception to this rule. Vietnam, a country of 97 million inhabitants, had not reported a single coronavirus-related death by June 9, 2020 and as of that time reported just 2.620 confirmed cases (27 per million!) and 0,4 deaths per million (total of 16 deaths!). Vietnam is a low–middle income country (2.185 USD per capita in 2017) with a low-spending healthcare system (130 USD per capita in 2017) and only 8 physicians per 10,000 population. However, unlike the case of Russia, there are several explanatory factors lending credence to Vietnam’s claims. Fresh experience with the previous SARS and H5N1 epidemics allowed Vietnam to respond with immediacy, effectiveness, and transparency. The country relied on just four solutions, all of them cost-effective, to combat the virus: speedy implementation of a national lockdown; strategic testing (26.519 test per 1 million population)Footnote ⁸⁵ using WHO-approved techniques and testing only those likely to be infected); contact tracing through apps; and effective public communication campaigns. Vietnam was also the first country in the world to be cleared of the SARS outbreak in 2003.

Based on these experiences, the most important factor influencing effectiveness of overall national policy appears to have been an educated approach to and respect for facts, evidence, and science from the national leadership as well as critical respect for international institutions.Footnote ⁸⁶

Learning from the scientific evidence and evidence-based practice in study of the effectiveness of non-pharmaceutical interventions against spread of SARS-CoV-2 is an imperative. Control of the pandemic while using combinations of movement restrictions, physical distancing, hygiene practices, and intensive case and contact detection and management proved effective in China, Singapore, and South Korea. However, the New Zealand government’s strategy is unique because it represents the most effective strategy in high-income democratic setting, if measured by outcomes, while employing scientific evidence and technical expertise in controlling COVID-19 with total of 2501 cases and 25 cumulative deaths (500 cases and 5 deaths per 1 million population).

Technical advisory group appointed by the Ministry of Health developed a strategy comprising of combination of intensive case and contact detection and management, physical distancing, movement restrictions, hygiene practices, and highlighting transmission hotspots and targeting community testing. It has been one of the keys to the success of its SARS-CoV-2 elimination and control strategy. It comprised of the following several science-led Footnote ⁸⁷sub-strategies as described in Nature Immunology paper:

• Quick and radical lockdowns. During the first wave of the pandemic (March 2020) the government implemented quick and radical lockdowns including travel restrictions and border closures. The speed and intensity of the New Zealand’s governmental response to limit the epidemic is unprecedented internationallyFootnote ⁸⁸ representing the fastest trajectory to reach the highest country score in the Government Response Stringency IndexFootnote ⁸⁹.

• Timely and targeted testing. A key feature of the success in eliminating SARS-CoV-2 was moving early (January 31, 2020) to rapidly develop and implement in-house laboratory RT–PCR (PCR with reverse transcription) tests for SARS-CoV-2. The initiative was developed by regional diagnostic laboratories and academic scientists. Total number of 1.9 million people have been tested (380.000 per million population) significantly lower percentage of population tested as compared to the G-8 countries (UK 1.871.000 per million, USA 1.219.000 per million)

• Viral genomics. Viral genomics was also critical to New Zealand’s successful public health response, with genomic sequencing being used as a key tool for understanding and limiting the spread of COVID-19

• Integrating genomics with epidemiological and modeling data. Local transmission chains and regional spread were able to be tracked and audited in real time

• Geographic information. When combined with geographic information, the pathways of viral spread, including from the global population, domestically and at the community level, were more easily revealed

• Superspreading events. A special focus of control was directed to identify superspreading events and trigger focused interventions.

• Transparent and credible governmental policy. Timely and decisive national leadership of New Zealand’s by prime minister Jacinda Ardern was evidence-informed combining, rigorous case detection, isolation, contact tracing, and quarantine measures with population education and engagement.

These are the very qualities which national leaders are obliged to demonstrate, without excuses or qualifications, as a bare minimum to fulfill their duties under international human rights law. Thus General Comment No. 25 includes in its list of core minimal obligations (paragraph 52) the following:

• Ensure access to those applications of scientific progress that are critical to the enjoyment of the right to health and other ESCRs;

• Foster the development of international contacts and co-operation in the scientific field, without imposing restrictions on the movements of persons, goods and knowledge beyond those which are justifiable in accordance with article 4 of the Covenant.

• Develop a participatory national framework law on the RPEBSPA, which includes legal remedies in case of violations, and adopt and implement a participatory national strategy or an action plan for the realization of the RPEBSPA, which includes a strategy for the conservation, the development and diffusion of science;

• Adopt mechanisms aimed at aligning government policies and programs to the best available, generally accepted scientific evidence;

• Ensure that people have access to basic education and skills necessary for the comprehension and application of scientific knowledge and that scientific education in both public and private schools respect the best available scientific knowledge.Footnote ⁹⁰

Where individuals are informed and knowledgeable in scientific matters and methods, their trust in results derived from science is greater. Where government officials, and especially national leaders, are informed and knowledgeable, and act in accordance with scientific evidence and human rights, citizen trust in both their leadership and in science itself increases. This is explicitly recognized in paragraph 54 of General Comment No. 25:

10.10 Conclusion

Trust in evidence-based policy and the right to science is a significant explanatory factor of the sharp contrast in the figures for deaths per 100,000 persons and case-fatality between Japan Japan (7.25/1,9%), Canada (62.06/2.3%), Russia (67,55/2,2%)Footnote ⁹², Germany (92.64/2.7%), France (143.47/2.0%), the US (169.07./1.8%), Italy (181.87/3.0%) and the United Kingdom (191,02/2.9%) respectively attributed to the SARS-CoV-2 virus.Footnote ⁹³ . That helps us better understanding the governmental policies and social behavior determining not only the number of number of cumulative casesFootnote ⁹⁴ but also in some cases capacity to organize effective vaccination policyFootnote ⁹⁵ The extent of such trust is not only a question of how educated leaders are or how many scientists are directly involved in government or administrations.Footnote ⁹⁶ It is also a question of the scientific organizational and social experience with epidemics, behavioral habits, cultural values, and respect for the institutional setup within and between nations.

This suggests and illustrates the significance of whether or not policy in general, and scientific policy in particular, follows the facts, data, and guidelines, as well as how much we adhere to the idea of a right to science. Given the general acknowledgement of the necessity and importance of science in the fight against COVID-19, it is an interesting question whether the respect for science generated by the episode is enough to counter the much-maligned pre-pandemic rise of “alternative facts” and “fake news” in the aftermath of the pandemic. Whatever the eventual outcome, the case of the SARS-CoV-2 virus pandemic clearly demonstrates that the right to science is equally challenging to implement and just as important for nations of the world as the idea of science itself. However, this chapter’s analysis of the elements of the right to science and their ability to enhance societal trust in science indicate that attempting to meet that challenge is a good idea.