“We hold these truths to be self-evident, that all men are created equal.” These words mark the beginning of the Declaration of Independence of the United States of America. What is remarkable here is the formulation of “self-evidence” as an invitation to a social consensus that should be accepted by all parties. It is the basis of our democracy and a central element of the Enlightenment. Science has also firmly adopted this element within its own universe. In a complex system of peer reviewing, transparent reproducibility of results, and disclosure of its methods, a resilient process for scientific knowledge has emerged. Today, facts are based on countless tests and critical arguments within the scientific community and mark the result of an immense distillation process in the common search for truth. This well-established approach is self-evident to all participants. Within our scientific world there is consensus on the grammar of this methodology.

However, the dissemination of alternative facts has significantly grown as an increasing number of people have access to multimedia channels and the opportunity to post and broadcast their views. Therefore, we are currently experiencing a growing disregard for established scientific facts and even face questioning of the scientific system itself. The climate debate is a particularly powerful example of this. In their Consensus Handbook published in 2018, the authors note a remarkable gap:

Thus, while the right of all people to benefit from scientific progress and its applications is recognized both in the Universal Declaration of Human Rights and in Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), a broad questioning of scientific unity has emerged in several societies. Science itself is the focus of criticism and is confronted in many places with doubt – from climate sceptics to vaccination opponents, and from conspiracy supporters of chemtrails to citizens who turn their backs on classical medicine and follow obscure miracle healers.

The vehemence of this rejection of science has increased to such an extent that even scientists themselves are now actively raising their voices: On April 22, 2017, I engaged in the March for Science in Berlin. Similar demonstrations also took place in other cities. Some 11,000 people, including several presidents of German science organizations, the Mayor of Berlin, and many impassioned students, spoke out against alternative facts and in favour of a fact-based policy. As we walked along the avenue Unter den Linden towards the Brandenburg Gate, I realized how absurd the scenery was: in the midst of an enlightened industrial nation embracing the fruits of science, we had to demonstrate for the most elementary principles of evidence through scientific facts!

But how could this discrepancy occur? What factors led to this growing scientific scepticism? What role does the media play and is science itself partly to blame for this development? In this chapter, I would like to highlight some aspects of this apparently disturbed science communication within a greater context.

11.1 Our Perceptions Do Not Correspond to Reality, But Are Increasingly Shaped by the Media

In 2017, Sinan Aral and his colleagues from the Massachusetts Institute of Technology (MIT) conducted a studyFootnote ² that analyzed how news spread on Twitter between 2006 and 2017. Their findings were worrying: on average, news that had been verifiedFootnote ³ as true took six times as long to reach 1,500 users than news verified to be false, and furthermore, false claims were shared 70 percent more often than correct information. “Falsehood diffused significantly farther, faster, deeper, and more broadly than the truth in all categories.” The most striking thing was that the conventional wisdom that bots accelerated the spread of falsehood more than humans was wrong: “humans, not robots, are more likely responsible for the dramatic spread of false news.” “Fake news” generates higher instances of emotional response, for example surprise or the perception of novelty, and thus substantially boosts click rates. In an interview with Sinan Aral, he explained to me that online portals financed by advertising in particular intensify this process, as they directly profit from the higher click rates induced by this cognitive effect.

The visibility of the respective content depends on the economic rules of a platform: while Facebook, Google, YouTube or Twitter may appear to be free of charge for the user, their business model focuses on their monetization as advertising platforms. The users themselves are the products as their data provides the basis for targeted advertising. The primary intention of social networks is therefore not mutual exchange and “connecting the world” as is often claimed, but rather to maximize the interaction of the user with tailored advertisements. Content that is frequently shared and viewed is automatically prioritized by algorithms and thus becomes even more visible.

Click rates, along with viewing duration and other parameters such as interactivity, flow into an algorithm and thereby determines the placement of the respective content. For YouTubers and Influencers, posted videos are even classified into different lucrative categories by algorithms. Depending on the content, you earn different amounts for the same number of clicks.

This focus on click-through rates automatically becomes an information filter. The focus is not on the content itself or its social relevance, but on a setup optimized for the algorithm, with the goal of maximizing advertising reach and thus the generation of higher income for the influencer. The grammar of these platforms determines the content. What began years ago in classic television media with an optimization of the audience flow has now developed into an art in its own right: search engine optimization (SEO), channel optimization, traffic control and keyword selection determine the reach on the net and thus the visibility of the information. All this has as its central purpose the maximization of user loyalty and retention time, since this forms the basis of the underlying business model of these platforms. The intensity of content-generation also plays an important role: Those who post only sporadically are downgraded by the algorithm and eventually end up in digital obscurity. Continuous activity, on the other hand, increases the reach of posted material. Out of this constraint, the content profile changes. The user does not post because they have something specific to say, but rather because the algorithm demands they be active. Through automatic reminders, the user is constantly encouraged by the platform to update their posts. The numerical recording and evaluation of page views, likes, reach, and responsiveness further fuels a spiral of excitement. Everything needs to be fast hence there is no time for pausing, questioning, and reflecting.

Interestingly, all this lacks any trace of transparency: companies like Google, Facebook, and Twitter do not disclose their internal modus operandi and so, even famous YouTubers and Influencers operate within a space that is digitally opaque. Instead of working with clear criteria and facts as a basis for the decision processes concerning the classification and evaluation of their videos, decisions are communicated to them as a result of the “almighty algorithm.” No outsider knows the underlying mechanisms of these algorithms. This means that the world’s largest video network lacks a culture of responsibility, openness, and accountability. There is no true communication with responsible “editors” and it is remarkable that the scene has not yet publicly protested, although a large number of YouTubers criticize this “algorithmic” handling. What would happen in the real working world, if employees without transparent criteria and rules were paid differently according to almost arbitrary arguments?

11.2 The Inscrutable Algorithms Increasingly Determine the Content, But So Far, We Have Dealt Too Little with the Consequences of This Changed Grammar

Even in the classical media world, content has been used as bait for advertising, but this interaction has thus far been subject to clear rules: Advertisements had to be labelled as such and journalistic work followed a clearly formulated code, rooted in principles such as truthfulness, due diligence, and the clear separation of advertising and editorial work. This agreement provided the freedom for journalistic independence despite the commercial basis of a newspaper. Although advertising revenue indirectly financed journalistic research, the editorial part remained largely unaffected.

In the new digital world of communication, these protected information spaces have disappeared. The celebrated Influencers are essentially masters of surreptitious advertising, for this is precisely where their business model lies. The world of colorful irrelevance is soaked in advertising impulses. What matters are the number of followers, and the larger the community, the more potent the advertising effect in the selected target group. In order for this to work, the algorithm has to be fed as optimally as possible. The medium shapes the content as only such content that fulfils the logic of the algorithms has a chance of reaching a wide audience. Therefore, content is determined by the commercial objectives of the algorithm’s coders and not by any journalistic criteria such as social relevance. Modern media focus on a new kind of business based on excitement.

Players such as Google took over the classical advertising business and professionalized it. The precise crystallization and addressing of target groups, the numerical accuracy of campaigns, the integration and targeted forwarding of buying impulses, the timely evaluation of advertising activities – all of these are not commonly offered by classic media. The user reveals their activities and interests and their data influences the information streams they get to see. This feedback automatically leads to the isolation and profiling of the individual. How far we have come in terms of targeting has been recently shown in a revealing experiment: As part of its “Privacy Project,” the New York Times bought targeted Internet advertising.Footnote ⁴ The newspaper “picked 16 categories (like registered Democrats or people trying to lose weight) and targeted ads at people in them.” However, instead of trying to sell products or services, they “used the ads to reveal the invisible information itself.” For example: “This ad believes that you are male, currently paying off your debts, but often shop in luxury shops.” The fine granularity of data captured allows, when combined with predictive algorithms, the ever more precise addressing of the individual, despite promised anonymity.Footnote ⁵ This “surveillance capitalism”Footnote ⁶ is the core business of digital platforms. The prediction of the user’s coming consumer desire becomes more and more accurate through better models and what, at the moment, still appears to be pure observation can easily degenerate into active manipulation through interspersed information.

11.3 These Intelligent Media Do Not Inform, But Change and Shape the Behavior of Their Users

What emerges here is a widespread attack on free will. The consistent application of these tools within the political arena could end any hope of free democracies. Internet platforms are becoming more and more powerful and at the same time their traditional media opponents, the free press, are dissolving. The newspaper and magazine industries are facing a dramatic decline in revenues and circulation figures. Larger publishers are securing their own survival with new digital business models, decoupling the old advertising business and setting up separate commercial platforms, job exchanges, real estate portals, or news aggregators whose algorithms reflect the individual interests of users. This change threatens not only the existence of the traditional media industry, but also that of critical journalism itself as the digital world currently lacks resilient business models for independent journalism.

11.4 Journalism Is Reduced to a Commercial Excitation Business

In the current transition phase between old and new media worlds, the categories of the digital platforms also infect the working basis of traditional media. We can all follow the fierce struggle for existence through circulation and quotas, which results in an increasingly hysterical press. The endless scandal-mongering and sensationalist headlines are like a last-ditch attempt to make oneself heard within the media noise. Once a theme becomes viral, it is taken up by everyone in a reactive cycle and drama-fueled feedback-loop. Editors break with the norms of classical journalism: In news programs, reports are accompanied by music and artificial moods are created through the use of slow motion. The former president of the German Bundestag, Wolfgang Thierse, put it aptly: “The talk shows are an essential part of the hysterical political communication in Germany. The focus not only on topicality, which is correct and understandable, but also on the aggravation in the title and in the moderation – fear, negative expectations, anxiety. That doesn’t promote and alleviate anxiety and fear, that doesn’t promote and fight populism.”Footnote ⁷

A study of the 141 German political talk shows in 2016, where German media constantly talked about refugees, showed that other relevant topics such as climate change or renewable energy concepts were not taken up in a single round.Footnote ⁸ However, now, only three years later, the climate debate is vigorously discussed across all forms of media following the global “Fridays for Future” protests.

The focus is no longer on content, but on attention. The guiding principles are not facts or social relevance, but reach, hit rates, and aggressive click-baiting.

11.5 We Underestimate the Effect of This Excitation Business on Our Perception

One well known example from science is the media coverage of animal experiments.Footnote ⁹ Emotions always win. The British market research company Ipsos MORI conducted a survey compromising 25,000 people from 33 countries in order to find out how the perceived reality of citizens differs from the actual facts in the country.Footnote ¹⁰ People in Germany, for example, estimated the percentage of migrants living in their own country to be twice as high as it actually was, whereas, in contrast, they underestimated the proportion of overweight people. When asked what proportion of children and young people under the age of fourteen were overweight, the answer was half that of the actual figure.

The open social networks are a tempting invitation to populists and conspiracy theorists. The Polish sociologist and philosopher Zygmunt Bauman describes this historical transformation process as liquid modernity:

This shift in priorities leads to a decoupling between the media world and reality. The perceived truth is more important than actual facts; the perceived will of the voter wins, even if this is perhaps only a wish far away from reality. When politicians intend to put a topic on the agenda, its media effect is explored first. Subsequently, we observe how the political agenda is increasingly dictated primarily by its media impact and not by the necessity of its content. How dramatic this situation has become can be seen, for example, in the absurd buckling of the Japanese government in the context of cervical cancer vaccination. The media power of the Japanese vaccination opponents led to a decline in the vaccination coverage from 70 percent to less than 1 percent.Footnote ¹²

11.6 “Digitality” and Reality Start to Mix

The appeal of the digital Eldorado lies in its latency-free response time, the complete dissolution of geographical distances, and its promise of abundance and augmented reality. Here, one moves from one impulse to another and the digital space turns out to be the breeding ground of a new world dynamic demanding constant innovations and surprises. This unprecedented attraction leads to a novel kind of global migration to a “digital continent.” Some see this migration into the digital world as running away from reality; an escapism from a real world replete with shortcomings and threats. Our attitude toward our personal lives is increasingly determined by the digital world. It is not only communication and information gathering that are organized by search engines and platforms. The net is increasingly becoming the kernel of our lives and the cosmos of our dreams. The focus of our consciousness is shifting into the digital world where profiles are the emerging substitute for the actual human and likes are becoming a barometer for one’s attitude to life.

The current German public television (ARD-ZDF) online study states in its 2018 report that the average daily Internet usage time of 14-year-olds and older has now grown to 196 minutes per day. In the younger age group of 14- to 29-year-olds, the average daily Internet usage is just under six hours.Footnote ¹³ In this group alone, the daily time for individual communication – chatting, emailing, WhatsApp or other messenger activities – adds up to 152 minutes.

As you are reading this sentence, over 200,000 Facebook posts and 22,800 new tweets are streaming online.Footnote ¹⁴ Facebook users watch one billion videos per day. Every second, 28,000 Instagram images are liked and on WhatsApp alone, more than 27 billion new messages are exchanged every day. These figures reflect the global intensity of this shift – no other medium has achieved such a high level of social penetration in such a short time.

In addition to communication, more and more processes are shifting from physical space to the digital universe: shopping, partner selection, booking travel, paying bills, and medical analyses, digital images of our reality are being created everywhere. This digital migration subsequently leads to changes in behavior, as “digitality” and reality mix. One example is the change in physicality: the portraits we see on Instagram or Facebook are often embellished by apps such as FacetuneFootnote ¹⁵ which can smooth wrinkles and skin spots, retouch body shapes, and bleach teeth using algorithms. The posted images are thus beautified artefacts that unfold their normative power over time. Here, too, the flow direction is reversed: real people attempt to emulate and correspond to their digital alter egos. We want to look like digital avatars. Actresses eliminate their wrinkles, politicians straighten their teeth, and newscasters dye their hair, because the visual impression is becoming increasingly important. If we compare the political campaigning of the seventies with today’s electoral campaigns, this change is obvious as the portraits of the candidates are now being retouched and smoothed in such a way that they look completely artificial. Here, a new culture of artefacts is established, which unconsciously extends to other areas as well.

While classical media still have to select their published content rigorously due to limited broadcasting space or newspaper pages, the digital world is free of these restrictions. The media space seems to be boundless and holds space for everything from potato cultivation, quantum physics, UFO sightings to political statements. Curation is almost completely eliminated, making the digital media space a gathering place for everything and everyone, superimposed by the dissolution of authenticity. Through the use of modern AI techniques, the production of “Deep Fakes” are now possible: artificial images and videos are already produced in such a perfect way that distinguishing between real and fake is almost impossible.

11.7 Fake Science

The increasing use of the word “authentic” is ultimately a sign of this emerging culture of artificiality. Over time, we become accustomed to transforming reality to our taste. So why not also adjust the universe of scientific knowledge according to our needs? Tobacco companies present studies minimizing the risks of smoking in pseudo-journals; pharmaceutical companies praise the effectiveness of their medicines; climate “experts” provide alternative explanations for global warming; and scientific institutes present a novel “dual-fluid reactor” that supposedly meets high safety standards as well as economic goals.Footnote ¹⁶ There are numerous specialist conferences, institutes, and purported experts whose publications and websites are characterized by the same patterns that are also used within “serious” science: they quote each other, use complicated technical terms, and list their merits. A genuine expert may notice the bluff, but to the layman there is no comprehensible difference and so what we experience is a questionable fusion of fake and real science.

In 2018, research by journalists from Westdeutscher Rundfunk, Norddeutscher Rundfunk, and Süddeutsche Zeitung (WDR, NDR, and SZ) revealed how dubious journals are diluting quality standards of scientific publications such as anonymous peer reviews.Footnote ¹⁷ Open access procedures and a large number of predatory journals, as the librarian Jeffrey Beall calls them, have changed the current fee model of scientific journalism.Footnote ¹⁸ Traditionally, readers financed printed journals through their subscriptions. With electronic publishing, an increasing number of journals are asking authors to pay and posting their articles on the Internet free of charge for the reader. The open access model has its advantages, because in principle it makes research accessible to everyone. Poorer nations in particular benefit from open access to up-to-date research. Most open access publications are no less trustworthy than the average of their printed predecessors, but a questionable business model has emerged from this reversal of the flow direction: In the life sciences alone, some 30,000 journals vie for paying authors. Under the general pressure to publish and the struggle for attention, junk journals are created that wave through the articles of their customers without serious peer reviewing. This system is fueled by additional drivers such as “impact factors.”

There is a remarkable parallel between the media and science landscapes, because in both cases traditional structures are being replaced by corresponding digital publication models. Editorial rigor begins to fade out and, in both cases, underlying commercial criteria become the driving force. As a result, the citizen is wrapped in a fog of questionable information and not in a position to distinguish between the relevant and the irrelevant or to classify news-streams accordingly. While for a long time, the procurement of information was an important criterion for responsible participation, we are now confronted with an ocean of information such that sorting and classifying becomes the essential skill, instead of critical analysis. But how is this possible, in an environment where algorithms and commercial platforms are taking over?

On the occasion of the 70th anniversary of the Universal Declaration of Human Rights, UNESCO expressed a desire to reaffirm its commitment, mandate, and role in the promotion and protection of human rights, but when the authors of the former declaration spoke of the merits of scientific progress in 1948, there was probably still more of a consensus on what it meant. In today’s world, the term has become blurred and one would almost have to ask whether universal declarations still matter, as our frames of orientation seem to have changed. Large political parties are dissolving, classical leading media are on the retreat, privacy is being commercialized. The balance between public and privately financed research has shifted and the border between the two has become blurred.

The application of intelligent commercial algorithms leads to a social de-solidarization effect. Within the insurance industry, for example, behavioral policy pricing models have been introduced. The former “we” is shifting to “I” and fragmented societies are beginning to lose their common denominator.

11.8 We Underestimate the Effect of Complexity

Thus far, many science communicators – including myself – have been convinced that scientific literacy would automatically lead to more responsible decision-making among citizens. However, we seem to have underestimated the impact of growing complexity.

Medicine, for example, so essential to our continued health, is becoming inscrutable for most people, but so are the worlds of technology, the media, and finance. The virus of complexity has spread everywhere. No politician truly understands the details of a free trade agreement and bankers are ignorant about nonlinear derivative algorithms. Car mechanics no longer diagnose what is wrong with a car by the sound its engine makes, but instead connect its internal systems to a computerized interface. Complexity has taken on such proportions that even the most everyday items are beyond our understanding. What is hidden under the smooth user interfaces of our touchscreens is far beyond our ken. When we proclaim the necessity of public understanding of science, we ignore the simple fact that the inherent complexity of science in the modern world makes this level of widespread understanding impossible.

In our technological world of wonders, we have to trust computer scientists, chemists, climate researchers, and medical professionals. Every farmer fertilizes his fields in total ignorance of the deeper mechanisms of the expensive granulates and pellets he distributes. He, who ploughs the same soil as his fathers and grandfathers once did, suddenly falters, confronted with the incomprehensibility of his surroundings. For most people, the explosion of knowledge and innovation is felt like an act of incapacitation. Progress pushes them out of their comfort zones into a world that is deeply unfamiliar. Uncertainty and mistrust spread, and the gleam of the Enlightenment is dimming. Some desire a simple world backed by clear answers and, in their voices, we can perceive the fear-driven anger of incomprehension. They fight against their incapacitation, terrified that the future will snatch their world from them. The former rulers of the clear and comprehensible are now the slaves of complexity, the guardians of tradition have become the driven ones of a disruptive progress. The phenomenal changes wrought by science and technology have generated a growing posture of resistance within societies. Suddenly, the voices of doubters, climate sceptics and vaccination opponents increase. People yearn for simple answers and in a complex world they will believe those who promise simplicity and plausible pseudo-rationality above those who tend towards a more complex explanation even if that is the truth.

11.9 How Trustworthy Is Science?

When researchers examined the immune system of bacteria a few years ago, they came across strange, repetitive gene sequences. Over time, it became understood that similar structures existed in the genomes of many different prokaryotes, and gradually researchers began to understand how bacteria, for example, protect themselves against viral infections. But then it became clear that this system, known as CRISPR-Cas, also poses a revolutionary and simple method for gene modification.Footnote ¹⁹ And with this promising potential application, the entire branch of research was poisoned overnight by economic incentives. The ongoing patent dispute over CRISPR between the Broad Institute of MIT and Harvard, UC Berkeley, and other players is a shameful example of how the scientific joy of a promising discovery can quickly lead to a bitter battle for economic exploitability. Now, attorneys, patent judges, and venture capitalists run wild with a scepter snatched from scientists.

Similar observations can also be made in other disciplines. Recently, the New York Times published an illuminating article about the salaries of researchers in the field of artificial intelligence research.Footnote ²⁰ At Google DeepMind in London, for example, the annual personnel cost for 400 employees amounted to USD 138 million in 2016. That is an average salary of $345,000 per employee. Consequence: Outstanding scientists leave public research institutes and universities in order to enter the service of large and well-paid private companies. These salaries siphon talent from the well of expertise that would normally feed independent, public institutions and universities. Independent expertise is lacking from discourses considering the medium- and long-term impacts of social networks and artificial intelligence. The questioning of Marc Zuckerberg by the US Congress in 2018 was a demonstration of political ignorance in the field of social media. The questions asked revealed a shameful paucity of knowledge about a fundamental influencer of global society and a relevant and necessary debate on the application of basic democratic principles to social media platforms was ultimately derailed due to a lack of independent competence.

It is time for science, with confidence and passion, to set a counterpoint to one-dimensional economic perspectives. Scientists must insist that their findings serve the common good. If algorithms increasingly destabilize our financial world, or perpetrate inequality and discrimination, then it is for the scientific community to critically question their conduct and permissiveness and rethink the consequences of their actions. If the findings of the psychology and neuroscience disciplines are irresponsibly misused by companies for the manipulative targeting of voters, as in the case of Cambridge Analytica, then we ought to hear a clear voice of dissent and opposition from the ranks of scientific professionals and researchers. But where, within computer science, do we hear critical discussions about algorithms or the growing evaluation of big data? In these fields, it is critical that risks are examined by coalitions with interdisciplinary expertise and a social perspective.

We urgently need more reflected progress. In some areas we are confronted with questions of dual use and unfortunately, there are not only “benefits of scientific progress and its applications.”Footnote ²¹ In the dawn of a new arms race, scientists could simply refuse to engage in any further research on autonomous weapons. Data scientists could question the goals of the commercial data collection frenzy, even if these questions could lead to restrictions within their own discipline. With the growing impact of science on all areas of our lives, societies must critically question the benefits and the objectives of scientific research. When science speaks of the “public understanding” of its disciplines, we should not conflate this with “public acceptance.” The right for everyone to enjoy the benefits of scientific progress and its application contains within its normative framework a right to clearly define wherein those true benefits lie.

11.10 Does Science Really Want Critical Dialogue and If So, What Is It Prepared to Do About It?

When research budgets are cut or funding falters, science likes to raise its voice. In June 2018, German astronaut Alexander Gerst started his mission on the International Space Station (ISS) and during each press event, the strictly “scientific” nature of his mission was repeatedly stressed. Here, “scientific knowledge” was used as an excuse, although there was no reliable basis for it.

Interestingly, criticism of space research is missing from the scientific world. But how different things are when people’s own research budgets are up for grabs. This was the case in 1990, for example, when the Federal Republic of Germany’s opulent space budget led to savings having to be made in other fields of research. Suddenly, there was an outcry: in November 1990, the German Physical Society published a sharp criticism of the benefits of manned space flight. At that time, there was a whole catalogue of plausible arguments against the promotion of expensive manned space flight. But was the underlying motive really a reasonable, critical discussion about the benefits of manned space flight? Did people want to set the priorities for funding according to scientific criteria in an advisory capacity? Or was it merely a matter of securing their own benefits? In the meantime, the physicists probably have enough money, and although the factual arguments against expensive manned space travel from that time are still valid, the critical voices seem to have faded. Thus, astronaut Alexander Gerst floated off on his “scientific” mission without any counterarguments.

If scientists want to argue credibly, they must demonstrate a degree of balance and rigor. They must take the floor to debate critically – also when their own interests are not the only consideration. Scientists ought to consider the misuse of the product of their own research a reason to raise their voices. Scientific knowledge shapes our technical progress, but its direction is currently set by private interests that do not always coincide with the interests of societies as a whole, and this is precisely where we need our scientific professionals to find the courage of their convictions.

The majority of digital innovations in Silicon Valley are based on lucrative business models. If these fail to materialize, usually no research will be conducted. However, there are some exceptions: In the early 1990s, Tim Berners-Lee invented the World Wide Web at the European research center CERN. On April 30, 1993, the directors of CERN declared that the technology should be freely available to everyone, without any patent claims.Footnote ²² Without this remarkable openness, marked by a decisive focus on sharing knowledge and foregoing profit, the overwhelming growth of the Internet may never have been possible.

Scientists ought not to orient themselves towards the market, but instead position themselves to offer the reasonable and independent guidance now much needed by an insecure society. This important dialogue between science and society, however, also requires appropriate financial support. So far, the scientific community has seemed disinclined to do so, apart from a handful of initiatives and projects whose paltry funding is at best measured alongside the purchase price of a somewhat more expensive piece of laboratory equipment.

11.11 Communication with Citizens Has Played a Subordinate Role in Science So Far

Although there are good initiatives and some notable individual efforts, there is still a general lack of systematic dialogue focused on reliable processes for scientists and citizens jointly to discuss critical issues, even though they seem to have common goals. The Science Barometer 2018, a representative survey of science organizations in Germany, shows that for three-quarters of the respondents, consideration for the common good is among the most important qualities that a good scientist must possess. However, less than half of those surveyed (40 percent), believe that scientists actually work for the good of society.Footnote ²³ According to the respondents, the principal explanation for distrust of modern science is its dependence on financial backers. Furthermore, more than two thirds of the respondents felt that the influence of industry on science was too great. If, in this context, we demand the right of all people to benefit from the advantages of scientific progress and its applications, then it is not only the ability of science to communicate and engage in dialogue that is of central importance, but also its independence.

Until now, young scientists have completed their studies without any obligatory education on the importance of, and techniques for, communication with lay people. There are no academic credits for the kind of dialogue with the public, which is frequently demanded of them. Education of new scientists simply does not focus on these issues. As a science journalist, I have spoken out for many years in favour of opening up science and, over the past twenty years, numerous initiatives have been launched in Germany. Since 2000, the Communicator Prize has been awarded to scientists in Germany who have rendered outstanding services to communicating their work or scientific issues in general to the public.Footnote ²⁴ The prize was intended to encourage scientists to engage more extensively in dialogue beyond their own community. The vast majority of scientists are unknown to those who benefit from their work and rarely enter the public arena. This applies equally to young talents who now shine in scientific circles. Even wonderful public lectures by scientists ask too much of the lay person and are often aimed at the science community and not at the general public. Scientists are too rarely seen on political talk shows, for example, and thus still lack a formative impact on broad cross-sections of the population. As a science journalist, over the course of thirty years, I have had to learn how difficult it is for most scientists to communicate with the general public. Most scientists, when interviewed, fail to break down their exciting research in comprehensible words or to explain complex concepts in terms intelligible to the lay person. A developmental biologist, who was a Nobel Prize winner, was once asked by students during a public event whether it was possible to revive dinosaurs, as in the film Jurassic Park. She looked at the student and asked what Jurassic Park was.Footnote ²⁵

11.12 Bottom Up

In the summer of 2004, twenty-eight-year-old Salman Khan helped his cousin NadiaFootnote ²⁶ who lived in New Orleans and had problems understanding mathematics. Salman Kahn, who had recently completed his master’s degree in computer science and electrical engineering at MIT and worked for the hedge fund Wohl Capital Management in Boston, designed a small website for his cousin. Nadia was then able to enjoy a special tutoring course despite a distance of more than two thousand kilometers. Salman has a great didactic talent. Using a simple messenger program, he first produced small online sequences with explanations and tasks for Nadia. He calmly taught her how to calculate fractions, guided her through the murky depths of the search for the lowest common denominator, and explained little tricks for shortening fractions and the secret of prime factor decomposition.Footnote ²⁷

As Nadia’s performance dramatically improved, her younger brothers Arman and Ali also followed their cousin’s online tutorials. Sal Khan expanded his website, bought a tablet and turned the screen into a lively blackboard where he gradually explained the mathematics curriculum to a growing crowd of students. He posted his first video on the internet on November 16, 2006. When he realized just how many people were avidly watching his lessons, he quit his job and created an informative world of online tutorials. Ten million students worldwide now use his free tutoring and can access over three thousand videos on the website of the Khan Academy. Yet Khan and his team continue to develop their learning platform. Personalized learning plans with tasks and tests make completely individual learning possible. In contrast to rigid, frontal teaching, the learning pace of the individual is also considered. Khan proved that even weak students can significantly improve their performance through the tutorials.

The Khan Academy is now one of the most successful free online learning platforms in the world.Footnote ²⁸ Influential individuals like Bill Gates, as well as many well-known multinationals, have supported the expansion of Khan’s online school with generous donations. With its staff of programmers, teachers, and data analysts still growing, every lesson is evaluated and optimized. This lively site represents a revolution in the education system. In addition, there is now an abundance of excellent YouTube channels that explain scientific connections in accessible and clear ways, often beautifully, artfully, and engagingly. Grant Sanderson’s outstanding mathematics blog on YouTube, “3blue1brown,” is an excellent example.Footnote ²⁹ While communication within institutional science is progressing slowly, individual talents on the Internet have uploaded or established great tutorial systems. Some of these sites have several million subscribers and demonstrate the potential for good science education.

In 2012, Harvard and MIT founded the online platform edX.Footnote ³⁰ A MOOC (Massive Open Online Course), it combines lecture videos with reading materials and open forums in which learners can exchange ideas. In the first year of edX, 155,000 students enrolled, more than have enrolled at MIT itself in the university’s 150-year history. Renowned universities are contributing to the platform in greater numbers: The University of California, Berkeley, for example, as well as the TU Delft, the Sorbonne in Paris, the ETH Zurich and the RWTH Aachen.

The curriculum of edX covers over 1,300 courses and, in the virtual classrooms, students from as disparate places as Brazil, the United States, India, and South Korea exchange knowledge, form study groups, and discuss teaching materials in Skype conferences. In this the largest virtual university in human history, world-renowned experts teach. Online education is now global and tens of thousands of students from every continent take part in a single virtual course on genetics, macroeconomics, or the history of the 1854 London cholera epidemic. For developing countries in particular, platforms like edX offer tremendous opportunities as they enable poorer students to gain access to education that might otherwise be beyond their reach. Other virtual universities have emerged, such as Coursera, Udacity, and NovoEd, and it is inevitable that many more will follow.

11.13 A New Scientific Self-Image

Although the teaching of science has improved considerably over the years, a resilient and professional dialogue is still missing when it comes to the goals of research, for example, or to ethical aspects of the research itself or its uses, or to questioning scientific progress in a broader, social context. In a world characterized by wide, fast-paced, and dramatic change, science must learn to deal with the social consequences of its actions much more intensively than in the past. Ethical questions and the meaningfulness of progress will come to play an increasingly important role. The same can be said of the independence of science from economic demands. This presents an opportunity, because citizens are increasingly looking for orientation and science should be the way in which they find that orientation. Open, professional communication between science and the public should become part of a new scientific self-image.

12.1 Introduction

It is not primarily in the articulation of a human right that it is given life, but in its implementation. With the adoption by the United Nations (UN) of an authoritative statement on the meaning of the right to science,Footnote ¹ the time is now to shift the focus of attention from conceptualization to implementation. To that end, this study moves beyond the previous work of the scientific, engineering, and health communities aimed at defining the right to science. The question at the heart of this study is whether there is potential for national academies to adopt a central role in the implementation of the right to science, serving as intermediaries to distill and frame key priorities regarding the right within their national context, and providing locally relevant and feasible recommendations for how their governments might fulfill their obligations under the right.

The “right to science” is a shorthand used to describe Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR). According to the text of Article 15, countries that are a party to the treaty (171 in total as of July 2021)Footnote ² are obligated to recognize the right of everyone to “enjoy the benefits of scientific progress and its applications,” to ensure the “conservation, development and diffusion of science,” to protect “the freedom indispensable for scientific research,” and to encourage “international contacts and cooperation” in science.Footnote ³ Although the language of the right specifically addresses “science,” the provision is intended to be inclusive of all sciences, engineering and health.Footnote ⁴

This study represents the third stage in a decade-long research endeavor led by the American Association for the Advancement of Science (AAAS) and AAAS Science and Human Rights Coalition. The first stage involved seventeen disciplinary-specific focus groups of United States-based scientists who were the first to explore what the right to science means from the perspectives of scientists.Footnote ⁵ The second stage involved a global questionnaire of scientists, engineers, and health professionals to identify regional variations in scientists’ views regarding the actions necessary to ensure realization of the right to science, as well as targeted interviews of public health professionals about the value of the right to practice.Footnote ⁶ This third stage involved a questionnaire of national academies of sciences and medicine, including national young academies, in countries that have ratified the ICESCR (and for senior academies, that are members of the InterAcademy Partnership), followed by interviews with a subsample of respondents to the questionnaire.

Multiple voices and perspectives are needed in the work to realize the right to science, including not only those of scientists, but also those particularly impacted by scientific progress or its absence, such as those affected by neglected diseases, those denied the benefits of scientific progress on religious or political grounds, and all children who stand to benefit from a quality science education. The focus of this study and decade of inquiry has been the engagement of the scientific community because, as the world’s largest multidisciplinary scientific membership organization, AAAS’s primary constituents, networks, and interlocutors consist of scientists. In addition, that engagement was explicitly encouraged by the UNESCO Venice Statement of 2009 which called on “scientists and their professional organizations to manifest their commitment to the right by … participating in the elucidation of the right.”Footnote ⁷ That said, for the right to have meaning in practice, all relevant communities, institutions, and authorities must be engaged to ensure the right, in its detail and nuance, is implemented and enjoyed by all.

12.2 Literature Review

The right to science was described by eminent international lawyer William A. Schabas as “tucked away at the tail end of the Universal Declaration of Human Rights,” occupying “a similarly neglected and obscure position” in the International Covenant on Economic, Social and Cultural Rights, and as a right that “has received little attention” even taking into account “the more general marginalization of economic, social and cultural rights.”Footnote ⁸ The relegated importance of the right within the human rights framework is reflected in the fact that not until March 2020 was a General Comment defining the right adopted by the UN treaty body responsible for monitoring its implementation, that is three decades after the first General Comment was adopted by the same treaty body. It is also reflected in the relative lack of literature on the right to science, although an upward trend in scholarly consideration of the right is discernible as of the last decade.

In 2015, Wyndham and Vitullo identified four stages in the evolution of the literature on the right to science: passing mention of the right as it related to other rights; consideration of the right as a whole as it related to the interests of the scientific community; exploration of the right as it relates to other human rights; and “a cautious coinciding of concerns among both human rights practitioners and scientists.”Footnote ⁹ In the past several years, that final strand has expanded to explore the practical significance of the right as a tool to affect change in law and practice, and to encourage and measure implementation of the right.

Building on and contributing to this final strand in the literature, collaborations with the scientific, engineering and health communities have made five substantive contributions. The first was in recognizing that the right to science “is not only a right to benefit from material products of science and technology. It is also a right to benefit from the scientific method and scientific knowledge.”Footnote ¹⁰ As such, the right to science is more than a general restatement, for example, of the right to health, to water, or to the Internet, as suggested in the early literature.Footnote ¹¹ Rather, science – its methods and the knowledge it generates – holds inherent value including by providing an empirical basis for laws and policies, by providing understanding of personal behaviors, and as the basis for economic growth.Footnote ¹² This point is specifically acknowledged in the General Comment.Footnote ¹³

The second major contribution was in the development of a conceptual framework for understanding “access” in the context of the right to science. That framework was presented as a “continuum of access,” defined at one end as “access for general public” and at the other as “access for scientists.” “A person’s position on this continuum can change over time, depending on his/her social context, interests, ability, and training.”Footnote ¹⁴ To move along the continuum of access from the general public to a scientist involves not only greater participation in the production of science, but also greater risks and responsibilities, and should depend on interest, ability, motivation, and training and the judgement of scientific peers, rather than socioeconomic position or government preselection. As such, support for the notion that the right to science includes a right to participate in science is another contribution of this preliminary body of work.Footnote ¹⁵

The third contribution of the preceding work is that the right to science, though only using the language of “benefits” and of “freedoms,” must be “exercised in a manner consistent with scientific responsibility.”Footnote ¹⁶ Such responsibilities are both internal in nature and align closely with ethical standards of practice as defined in most scientific disciplines, but also include responsibilities aimed at the larger community, or the “social responsibilities” of scientists, as recognized in the UNESCO Recommendation on Science and Scientific Researchers (2017) and by leading scholars in the field.Footnote ¹⁷

Finally, previous research engaging the scientific community globally has demonstrated that the evolving meaning of the right to science, particularly the benefits of science to society and the government actions required to support the advancement of science, are generally shared by scientists across all regions of the world.Footnote ¹⁸ However, there is global variation across disciplines about the benefits of science to society, and the government actions that scientists in industry consider to be of most value are distinct from scientists in other sectors.Footnote ¹⁹

Although the UN process to define the right has only just come to an end, literature on implementation of the right – how it could be achieved in specific domains, and how to measure implementation – is growing. For example, since 2016 the Luca Coscioni Association, together with the International Human Rights Clinic of the Loyola Law School, has developed reports on specific legislation and judicial measures that could be taken to implement the right. Topics of focus include access to in vitro fertilization,Footnote ²⁰ and abortion and contraception.Footnote ²¹ In addition, the Association has developed a set of preliminary indicators by which to measure realization of the right along five dimensions: access to benefits; opportunities to participate; scientific freedom; enabling environment; and international cooperation.Footnote ²²

The shifting emphasis in the literature from conceptualization to implementation suggests growing consensus around foundational concepts at the core of the right. It also suggests that a pragmatic realization is emerging that only through testing the receptivity of domestic legislative bodies, national and regional judicial bodies, and UN treaty bodies to certain interpretations of the right will progress in its implementation in practice occur. It is to that end that this study examined the actual and potential role of academies in helping to realize the right to science.

12.3 National Academies

National academies are merit-based organizations that champion the advancement of science, scientific exchange, and evidence-based decision-making.Footnote ²³ They are typically independent of government and are found in most countries of the world. Building on the foundations of Plato’s academy (387 BC),Footnote ²⁴ the oldest existing science academies originated in Europe in the 1600s, while academies in the Americas, Asia, and Africa emerged later, beginning in the mid-1800s up until today.Footnote ²⁵ The newest academies have emerged just in the last few years, especially within Africa, including for example the Rwanda Academy of Sciences (2016),Footnote ²⁶ the Burundi Academy of Science and Technology (2017),Footnote ²⁷ and the Eswatini Academy of Sciences (KEAS, 2018)Footnote ²⁸ among others.

In addition to large differences in the number of years they have been in existence, academies vary significantly in terms of their national role(s) and visibility/recognition, their relationship with their government, their size (i.e., number of members and staff), and their resourcing level and source. National academies of science can broadly serve any number of four primary functions in their countries:

1. (1) Recognition: members are typically elected by current members in recognition for their scholarship and achievements in their field.Footnote ²⁹ In many countries, academy membership is among the highest honors a scientist can achieve in their career.

2. (2) Science programs and outreach: through various grant and fellowship programs and school/public outreach, many academies deliver science programs for young scholars and the broader community, including science diplomacy programs.

3. (3) Independent science advice: many academies provide high quality, independent advice to their governments on issues of policy importance through mechanisms such as consensus reports, statements, and other products.

4. (4) Research funding: some academies have research funding or laboratory institutions under their jurisdiction (e.g., many of the academies of the former Soviet Union and those in China).

Common challenges include reliance on project-based grant funding for many of their activities, and poor gender balance and diversity (the Global Young Academy and many of the National Young Academies, described below, being exceptions in terms of gender balance and diversity). The first women were elected to national academies beginning in the 1920s. A 2015 survey of sixty-nine academies found that, on average, women made up 12 percent of total membership, although this gender imbalance is beginning to shift.Footnote ³⁰ Some academies are not completely independent from their governments, due to their national structure.

Serving a coordinating function across academies, the InterAcademy Partnership (IAP) is a global network of 145 academies, including 25 medical academies and three engineering academies. Founded in 1993, the IAP’s vision is for the world’s academies to play a vital role in ensuring that science serves society inclusively and equitably and underpins global sustainable development. Among its activities, the IAP supports the Global Young Academy,Footnote ³¹ which, in turn, serves as a liaison among the independent National Young Academies (NYAs). In contrast to their “senior” academy counterparts, NYAs are made up of early- to mid-career scholars, often from a wider range of disciplines. Members apply and are competitively selected by their peers, often not only for their excellent scholarship and scientific achievement but for their commitment to serve society. Many NYAs are affiliated with and may receive funding or in-kind support from their country’s senior academy, with various degrees of independence. Today there are more than forty NYAs, the majority having been established in the last ten years.Footnote ³²

12.4 Methodology

As the first step in determining academies’ views on how the right to science could be used to address core concerns at the intersection of science and society, the project team developed a fifteen-item questionnaire that was sent to all IAP member academies and National Young Academies in countries that have ratified the ICESCR. The questionnaire, deployed using the SurveyGizmo online platform, was sent by IAP to 128 senior national academies and by the Global Young Academy to 44 NYAs. Responses were received over approximately three weeks in June and July of 2019. Representatives of ninety-two academies total responded to the questionnaire, a response rate of 53 percent. Questionnaire responses were entered into SPSS for analysis.

Questionnaire respondents were asked if they would be willing to participate in a follow up interview. In total, fifty-three of the ninety-two respondents volunteered to be interviewed. Of the fifty-three, twenty senior and young academy respondents were selected. The selection was made to ensure diversity across multiple factors: region, academy size, the degree to which the academy did or did not already engage in human rights activities, and the respondents’ opinion about whether the right to science may or may not be relevant to their work. Of these twenty, fourteen interviews were conducted. The remaining six respondents were either unavailable during the study timeframe or could not be reached. The interviews varied in length from approximately fifteen to sixty minutes, although most took about thirty minutes. The interviews were divided among several project team members and conducted by phone, Skype, or web conference. Interviewers took detailed notes during the conversations. Audio recordings made during the conversations were used to verify notes, as needed. The research team reviewed and verified interviewer notes before three members (M. Vitullo, N. Weisenberg, J. Wyndham) participated in the process of coding the interview notes. Excerpts from the interviewers’ notes (with occasional quotations from the interviewees themselves) are included in the “Results” section.

The interview data analysis process had several stages. First, three members of the research team each closely read a subset of interview notes and used an inductive processFootnote ⁴¹ to identify concepts that appeared in those interviews. The results were then compiled into a single list of codes. Next, the interview notes were uploaded to the qualitative analysis software package Dedoose. The codes became the basis for an iterative coding process in which one member of the team (M. Vitullo) read and coded all of the interviews, including those from the first stage of the analysis, comparing the compiled list of codes with additional concepts and themes that emerged subsequently. As themes emerged, codes were added or removed. Finally, results from the coding process were then shared with the entire team for further discussion and refinement.

12.5 Results

12.6 The Right to Science is Little Known Yet Perceived by Many As Core to the Academies’ Missions

Academies possessed limited prior knowledge of the right to science. Fewer than half of the ninety-two questionnaire respondents had heard of the right prior to receiving the questionnaire. There were, however, significant differences across regions. Academies in the Asia-Pacific region were the least likely to be aware of the right, where 33 percent reported prior knowledge. Academies in Europe were the most likely to report prior awareness, with 62 percent reporting having heard of the right before receiving the questionnaire.

After learning about the right to science, respondents described the ways the concept captured their attention. One respondent immediately sent the information to his academy’s Executive Council. Other respondents asked for more information about the right, how it was defined, and what other countries were doing on the topic. One respondent told the project interviewer that she thought that there was a tacit understanding of the right to science within her academy, but that it had never been directly expressed as such.

Although in most cases the academies had not engaged in activities explicitly tied to the right to science, many respondents viewed the concept as central to their missions and seemed to believe that future activity on this topic would be fully in alignment with their priorities.

On a scale of 0 to 3 (with 0 representing no influence, and 3 representing significant influence), academies across the globe reported an average government influence level of 1.4, and an average public discourse influence of 1.6. Regional variations in these two influence scores were not significant in one-way ANOVA tests of difference in means. The questionnaire respondents in Africa and in the Middle East evaluated their academies’ potential role in the fulfillment of the right to science more positively than their ability to influence government policy generally. Academies in Africa also saw their potential role in the fulfillment of the right to science as greater than their potential to influence public discourse. Compared to the academies in Africa, academies in Asia-Pacific and Europe saw significantly less of a role for themselves in the fulfillment of the right to science.

12.7 Barriers

While the right to science resonated with the interview respondents once they were aware of it, and in many cases, it was concordant with the activities of their academy, that does not suggest a simple or easy path from nascent interest to meaningful engagement. Other parts of the interviews brought to light a variety of challenges that would have to be addressed in any such efforts.

12.8 Approaches to Overcoming Barriers

While the data discussed here points to a variety of potential barriers to academies’ engagement in the fulfillment of the right to science, it also provided insights on possible approaches to overcoming those barriers.

12.8.2 Identifying Strong Shared Interests across Regions

The questionnaire asked whether, over the past three years, the academy had engaged in activities related to any of eight specific topics: science education, health care, climate change, sustainable development, emerging technologies, ethics, scientific freedom, and open access. We were interested to see if there was regional variation in levels of interest in these topics. Within each region, the activity engaged in by the highest proportion of academies in that region was ranked first. The activity engaged in by the next highest proportion of academies was ranked second, and the one following third. If two activities enjoyed engagement in the same proportion of academies in a region, multiple activities could have the same rank. We then examined areas of overlap across regions.

The results of this analysis are presented in Table 12.3. Science education and sustainable development appeared among the first or second ranked topical activities for academies in every region examined. Conversely, open access was ranked just third in Europe, and scientific freedom did not rank in the top three for any region. This suggests that introducing the right to science as a tool for working on the areas of science education and sustainable development might be widely perceived as important and useful. On the other hand, focusing on the right to science as applied to open access and scientific freedom are topics that would be less likely to receive broad support.

Table 12.3 Ranking and Overlap in Academy Activities by Region

Note: If within a region, the proportion of academies engaging in a specific activity were equal, this could result in two activities being “tied” within a rank.

12.9 Conclusion

The central question at the core of this study was whether, and to what extent, there existed the potential for national academies to adopt a central role in the implementation of the right to science. The right has been recognized as lying at the “heart of the mission” of the world’s largest scientific membership organizationFootnote ⁴³ and it is a right that all countries that are a party to the International Covenant on Economic, Social, and Cultural Rights are bound to respect, to protect, and to fulfill. The UN General Comment on the right to science reveals conceptual agreement around the general scope of the right. Building on the growing literature on the right, and the nascent UN efforts, the imperative now is to give the right life by applying it in practice.

The results of this study reveal that, to the extent that academies engage in activities adopting an explicit human rights frame, they are most often focused on civil and political rights, and particularly the rights of scientists. Yet, there is considerable work being undertaken by academies that addresses policy concerns directly related to the full scope of human rights, and a recognition that the right to science in particular is relevant, if not even core, to the work of the academies.

Although academies identified several actual and perceived barriers to greater engagement in human rights, they also provided examples of ways such barriers can be overcome, suggesting a roadmap for future engagement by academies with the right to science. The first and most vital step will be the provision of resources, including training and opportunities for dialogue about the right to science among academies, their staff, and their members to lay the groundwork for future engagement.

The findings also make clear that building upon existing partnerships and collaborative efforts on human rights would be the appropriate approach for any effort to engage academies in activities related to the fulfillment of the right to science. Moreover, such an approach has the benefit of leveraging the greater resources of some academies in ways that empower action on the part of those that are less robust organizationally. In addition to the HR Network, another specific mechanism that was mentioned in the interviews was for IAP to consider issuing a statement on the right to science; such a statement could be issued jointly with the GYA and the National Young Academies.

The right to science is articulated in an international treaty that binds states, and those states are required periodically to report to the UN about their efforts toward the fulfillment of their obligations. In that context, if national academies initiate new activities and frame existing activities in terms of the right to science, this could provide a unique benefit to states party, helping foster the progressive realization of the right in ways that could be documented to the United Nations but also building more positive relationships between academies and governments.

As such, the right to science could be a valuable tool to assist national academies in strengthening their current activities and furthering their overall goals. As multiple academies recognized the right to science as relevant to, if not central to, their activities, the opportunity exists for academies to explore how the framework of the right could be used to inform the cultivation of relationships with relevant interlocutors at the national level. Academies could also build bridges regionally and internationally with academies in countries bound by the right and potentially facilitate prioritization of organizational policy goals. Furthermore, as one respondent from a young academy said, connecting the activities of the academy to human rights might provide a way to respond to the interest of members to connect with something larger than themselves. Indeed, implementation of the right to science would be of great benefit not only to scientific enterprise, but also to all of society.

13.1 Introduction

The human right to enjoy the benefits of the progress of science and its applications (the right to science, or RtS), enshrined in Article 27(2) of the Universal Declaration of Human Rights (UDHR) and Article 15(1)b of the International Covenant on Economic, Social, and Cultural Rights (ICESCR) “adds a legal and moral dimension to a range of fundamental issues, including scientific freedom, funding, and policy, as well as access to data, materials, and knowledge” (Reference Porsdam Mann, Donders, Mitchell, Bradley, Chou, Mann and PorsdamPorsdam Mann et al., 2018). Part of the promise is that the RtS, as it becomes more developed, may be used as a legally binding and normatively weighty framework for the assessment of the ethical and human-rights related aspects of science and scientific policy.

This chapter introduces the four-step test, a framework developed as a means to assess whether a policy complies with the obligations imposed by the right to science under international human rights law. In doing so we, like the Committee on Economic, Social and Cultural Rights in its new General Comment (CESCR, 2020), adopt an “internal perspective” for the purposes of this sketch. This means that we have drawn extensively on scholarship, guidance, and interpretation of the ICESCR itself.

Unfortunately, there has not been space here to fully explore the “external perspective,” in which the relations between rights across treaties and other human rights instruments are factored into the desiderata that make up our proposed test in four stages. We will explore this in subsequent work. We hope, however, that the sketch presented here will engender fruitful discussion so that it may be made into a useful judicial and policy framework.

13.2 Background

We take as our points of departure several general approaches to the interpretation of State obligations under international human rights law (Reference DondersDonders, 2011), including the provisions laid out in the Vienna Convention on the Law of Treaties (Vienna Convention).Footnote ¹ Article 31(1) of the Vienna Convention stipulates that, “[a] treaty shall be interpreted in good faith in accordance with the ordinary meaning to be given to the terms of the treaty in their context and in the light of its object and purpose.” This context is defined in Article 31(2) as including general rules of international law as well as further applicable agreements and treaties. More importantly, since there are fewFootnote ² agreements and treaties between countries with regards to the RtS, Article 31(3)b states that also to be taken into account is “[a]ny subsequent practice in the application of the treaty which establishes the agreement of the parties regarding its interpretation.” This includes statements of official treaty bodies, in particular General Comments, which are authoritative interpretations. In our case, the General Comments by the Committee on Economic, Social and Cultural Rights (the Committee) are especially relevant.

As a human right, the RtS places obligations on States which have signed and ratified the ICESCR. According to the tripartite typology (Reference EideEide, 1987), an analytical device much used by the UN and human right scholars to interpret the nature of State obligations under human rights law, these obligations can be conceptually stratified into three: the obligation to respect the right, to protect it and, finally, to fulfil it. Paragraph 41 of General Comment No. 25 adopts this language: “States Parties have an obligation to respect, protect and fulfil the [RtS].”

The first refers to the obligation of States not themselves to violate a right or unjustifiably interfere in its enjoyment. The obligation to protect is somewhat more burdensome, requiring that the State must prevent third parties from violating a right. Finally, to fulfil a right, a State must ensure (facilitate and provide) that the various resources, infrastructure, and necessary funding are available to fully realize its enjoyment, also for noncitizens.

As of this writing, 174 countries have signed the ICESCR. Of these, 170 are full States Parties; however, Palau, Comoros, Cuba, and the United States of America have signed but not ratified the Convention. As Cesare Romano points out in his contribution to this volume, the USA is, however, bound by the UDHRFootnote ³ and the American Declaration of the Rights and Duties of Man, the latter of which contains the first instance of the right to science in international law (see Chapter 2).

Moreover, a country which has signed but not ratified the ICESCR is still bound by Article 19 of the Vienna Convention not to act in a way that would defeat the object and purpose of that treaty. In other words, the USA is still bound to respect the RtS. This in contrast to the 170 countries that have signed and ratified the ICESCR, which are in theory bound by all three levels of obligations.

These obligations must, however, compete for scarce resources with other human rights and policy goals. For this reason, the obligations that States are under vis-à-vis the ICESCR are subject to the requirement of progressive realization, laid out in Article 2(1): States must “undertake to take steps, individually and through international assistance and cooperation, especially economic and technical, to the maximum of its available resources, with a view to achieving progressively the full realization of the rights recognized in the present Covenant by all appropriate means, including particularly the adoption of legislative measures.”

In its General Comment on Article 2, the Committee has made clear that States are under an obligation to take these progressive steps within a “reasonable, short period of time” and that this obligation “implies not only legislative measures, but also administrative, financial, educational, social and other measures, including judicial remedies” (Reference DondersDonders, 2011). The Committee also states that these obligations are proportional to the resources available to a State, such that the more resources are available, the greater the obligations under the ICESCR.

Paragraph 24 of the General Comment closely follows this phrasing:

Some obligations, however, are so important that they form an exception to this rule and must be observed immediately, regardless of resources. This includes the obligation under Article 2(2) ICESCR for the rights in that document to be enjoyed without discrimination. Thus, paragraph 25 of the General Comment 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.”

Finally, both Articles 2(1) and 15(4) ICESCR mention the importance of international cooperation and assistance. In the General Comment on Article 2, the Committee makes clear that, for the purposes of obligations under the ICESCR, “available resources” should be interpreted to include those resources available from international cooperation, and that wealthier countries are under a special obligation to assist the less prosperous (CESCR, 1991). The General Comment on Science, in devoting its sixth section wholly to international cooperation and assistance, stresses the importance of these obligations.

13.3 Normative Content

The normative content of the RtS has been treated in detail by the General Comment, which draws heavily on the 2017 UNESCO Recommendation on Science and Scientific Research. Section II of the General Comment is titled “Normative Content” and contains several provisions, laid out in paragraphs four to fifteen, which define key terms.

13.4 Four-Step Test

13.5 Concluding Remarks

One section of the new General Comment is dedicated to the interdependence of the RtS with other rights. Thus, paragraph 63 acknowledges that, “the REBSP is a human right with an intrinsic value, but it also has an instrumental value, as it constitutes an essential tool for the realization of other ESCRs, in particular for the right to food and the right to health.”

In a systematic review conducted of the literature on the RtS, the most commonly stressed themes found were access and the connection to other human rights, with other highly cited themes including intellectual property protection, participation in science, and dual use (Reference Porsdam Mann, Donders, Mitchell, Bradley, Chou, Mann and PorsdamPorsdam Mann et al., 2018; Reference Porsdam Mann, Donders and PorsdamPorsdam Mann, Donders, and Porsdam, 2020). Thus, it was acknowledged that science is important for the fulfilment of other human rights duties, but also that it has value of its own.

The RtS has wide applicability across themes at the intersection between science, society and the individual. Part of its promise lies in its universal nature: since the RtS is a human right, everyone is, in theory, equally entitled to enjoy it. The idea is that, barring good reasons to the contrary, everyone should be able to enjoy access to the benefits of the progress of science and its applications. By comparison, the standard framework for regulating access to scientific materials and output today is based on intellectual property protection, which is exclusionary in nature. Here, the idea is that, barring good reasons to the contrary, no one should be allowed access to the benefits of scientific progress unless they are willing and able to pay.

Our aim has been to provide a sketch of a framework for the assessment of policies according to their compliancy or otherwise with the obligations imposed by the RtS. One of the strengths of our model is that it has been developed using only pre-existing concepts and instruments, which should be largely uncontroversial, and should facilitate the evaluation of human rights implications by those familiar with these tools.

In the first step, general definitions are brought to bear to determine whether an issue or policy proposal falls within the scope of the RtS. The second step involves figuring out whether any of a set of proposals fulfils the RtS, and if it does not, whether the options are best classified as derogations, retrogressive measures, or limitations. In step three, commonly accepted human rights instruments and concepts are used to determine the legitimacy of proposed policy options. The fourth and final step then simply requires the choice of the best possible remaining option.

A policy option that makes it all the way through the four-step test fulfils the following criteria: it is enacted according to the rule of law; and it is the option which produces the greatest amount of general welfare in a democratic society out of the set of options which are based on science, compatible with the nature of economic, social and cultural rights, respect fundamental human rights principles, and are balanced according to their impact on the enjoyment of all human rights. Beholden to the general and individual interest, it is our contention that any such outcomes are likely to be superior to the criteria according to which current science policy is determined.

Our hope is that by bringing together different schemes, including the General Comment No. 25 and academic reflections, this sketch has contributed toward building a useable framework that may help activate the RtS in practice.

Human rights play a tremendous role in successfully tackling communicable diseases worldwide. The application of the right to health with the rights to nondiscrimination and participation has created pathways for civil society involvement in the design, implementation, and oversight of health programs, and has created space to grow social movements in the global health sphere. Activists in the HIV/AIDS movement, such as the ACT-UP members quoted in the above epigraph, realized early in the course of the HIV epidemic that science, health, and human rights are inextricably linked; and that, in fact, the combination of scientific progress and respect for human rights will be essential for achieving an AIDS-free generation. Scientists working on infectious diseases have themselves voiced the intrinsic human rights dimensions of science, exemplified by South African Medical Research Council president Glenda Gray’s comparison of good science to clean water; both are public goods and basic requirements of a life with dignity.

Given the deep connections between science and rights, one might assume that the right to science has provided a rallying point for social movements tackling health and human rights issues. The right to science – established by Article 27 of the Universal Declaration of Human Rights (UDHR) and Article 15 of the International Covenant on Economic, Social, and Cultural Rights (ICESCR) – speaks to many of the freedoms and entitlements at the heart of global health movements.Footnote ³ Footnote ⁴ Yet, the size and success of the HIV/AIDS movement remains exceptional; similar movements have not coalesced around other infectious diseases to the same extent. (The COVID-19 pandemic may yet spark social mobilizations rivaling the size and durability of those against HIV/AIDS, a potential explored in an addendum ending this chapter.) Nor has the right to science been analyzed in any form that comes close to matching analyses of the right to health advanced by civil society, scholars, and the United Nation (UN) system.

Consistent with the interrelation of human rights, the right to science cannot be entirely separated from the right to health and other rights, but is in fact a complementary right. Yet, global health advocates have so far not claimed the right to science as a practical tool for securing health and human rights. In this chapter, we show the importance of undertaking a detailed, applied analysis of the right to science for the elimination of tuberculosis (TB) as the world’s deadliest infectious disease. We analyze the access and participation dimensions of the right to science, departing from a traditional right to health analysis to supply a workable entry point for advocacy for the global TB response. The discussion of two ethical pillars of participation – inclusion and reciprocity – illustrates how promoting the meaningful involvement of marginalized communities in TB research is a prerequisite for states’ abilities to fulfil their obligation to ensure all people can enjoy the benefits and applications of scientific progress. The final section presents examples illustrating how activists have begun to invoke the right to science as a basic human right. These cases demonstrate the importance of disentangling the right to science from the right to health, even while acknowledging their interrelation, in order for this right to become a truly powerful avenue for advancing global health equity.

14.1 TB Research: In Search of State Attention

TB has killed more people than any other infectious disease in human history and remains the leading cause of death from a single infectious agent globally.Footnote ⁵ Footnote ⁶ In 2018, 10 million people developed TB and 1.3 million died from the disease. The deadly persistence of TB stems, in part, from the failure of scientific advances to keep pace with an epidemic that has evolved both in response to and away from last century’s medical interventions. Over time, TB has grown more difficult to treat and formed syndemics (i.e., epidemics that occur together and magnify each other’s effects) with other global health threats such as HIV and diabetes. A review of TB research investments by the World Health Organization (WHO) concluded: “The present and future threat TB poses to human health is mainly a consequence of the enormous neglect the TB research field has experienced over the past several decades.”Footnote ⁷

This neglect reflects chronic underinvestment in research and development (R&D). There is a lack of scientific innovation in TB due to insufficient funding by the public sector and limited and diminishing activity by the pharmaceutical industry.

At the 2018 United Nations High-Level Meeting on TB, UN member states committed “to mobilize sufficient and sustainable financing for research, with the aim of increasing overall global investments to US $2 billion [per year] … ensuring that all countries contribute appropriately to R&D.”Footnote ⁸ (The $2 billion annual target was first set by the Stop TB Partnership in 2006.) An annual survey of TB expenditures by public, philanthropic, private, and multilateral institutions conducted by Treatment Action Group (TAG) over the last fourteen years shows that annual investments in TB R&D have fallen far short of this $2 billion target, never exceeding $900 million in any given year.Footnote ⁹ This points to states’ failure to support science, either by failing to directly fund TB research, or by not putting in place legislative, regulatory, and policy frameworks able to attract investment by other sectors.

In 2017, less than 0.1 percent of the estimated $97.2 billion spent on R&D by the pharmaceutical industry went to TB.Footnote ¹⁰ This is the consequence of a biomedical innovation system driven by market returns rather than public health need; any system focused on commercializing innovation for profit will direct few resources to TB and other diseases of poverty.Footnote ¹¹ Footnote ¹² TAG’s data document a clear decline in this already limited TB research spending by pharmaceutical companies and an increasing reliance on the public sector to fund TB R&D.Footnote ¹³

Although public money underwrites most TB research projects, pharmaceutical companies often retain control over research outputs. Responding to this, activists have demonstrated how the public pays three times for TB innovation.Footnote ¹⁴ First, to fund the research itself. Second, to purchase resulting technologies at prices set by pharmaceutical companies, which hold intellectual property on publicly funded innovations. And then again when these same companies that benefit from public research dollars deplete public budgets through tax evasion schemes.Footnote ¹⁵ When research produces breakthroughs, these tools are priced out of reach or otherwise remain unattainable for most people with TB. This reveals the importance of recognizing access as a cornerstone of the right to science.

14.2 “The Right to Science Connotes, First of All, a Right of Access”

Thus wrote former Special Rapporteur (SR) in the field of cultural rights, Farida Shaheed, in her 2012 report to the Human Rights Council.Footnote ¹⁶ Legal scholars such as Lea Shaver have similarly described access as “the touchstone concept of the right,” inherent in its earliest formulations, and visible in the way UDHR Article 27 speaks of the right of everyone “to participate in cultural life,” “to enjoy the arts,” and “to share in scientific advancement and its benefits.”Footnote ¹⁷

Determining what constitutes access under the right to science is critical to turning this right into an entitlement that individuals can claim, and into a tool that activists can use to hold states accountable for meeting their attendant obligations. Under international human rights law, access is composed of multiple dimensions, and “the dimensions of access require some adaptability from right to right.”Footnote ¹⁸ General Comment No. 14 of the Committee on Economic, Social and Cultural Rights (CESCR) describes access under the right to health as encompassing four domains: nondiscrimination, physical accessibility, economic accessibility (affordability), and access to information.Footnote ¹⁹ In the 3AQ framework, accessibility sits alongside the availability, acceptability, and quality of health facilities, goods, and services as an essential element of the right to health in all its forms and at all levels.

In General Comment No. 25, CESCR related the 3AQ framework to the right to science and added a fifth element: the protection of freedom of scientific research.Footnote ²⁰ The application of the 3AQ framework to the right to health has greatly clarified the nature of state obligations with respect to access. The analysis of access in General Comment No. 25 also reflects the work of scholars and activists to sketch the dimensions of access under the right in the lead up to CESCR issuing this authoritative legal interpretation. In keeping with one of the foundational principles of international human rights law, access must satisfy the requirement of nondiscrimination (e.g., ICESCR Article 2.2). The treaty language in Article 15 describes scientific progress in terms of both its “benefits” and “applications.” This strongly suggests that access extends beyond general knowledge to encompass tangible applications of science.Footnote ²¹ Similarly, Audrey Chapman has said that the term “benefits” should be understood as including “material benefits,” and that a human rights approach requires attention to how these benefits are distributed to disadvantaged communities.Footnote ²² Shaheed condensed these ideas into the powerful statement that “innovations essential for a life with dignity” must be accessible to everyone.Footnote ²³

This idea has provided a powerful hook for TB activists seeking to connect people affected by TB to the tangible outputs of science in the form of new drugs, diagnostics, and vaccines. This is familiar territory. The phrase “innovations essential for a life with dignity” contains echoes of the term “essential drugs,” provision of which is a core obligation under the right to health.Footnote ²⁴

TB activists have intuited the importance of not narrowly defining access as meaning only material benefits. Just as people with TB need new drugs, scientists need access to data, samples, and compounds. The right, therefore, must encompass the ability of scientists to access the means, methods, and tools of discovery. And both scientists and the public need access to intangible forms of knowledge and information. This idea is represented by the “continuum of access” developed by the American Association for the Advancement of Science (AAAS), which depicts access as stretching from the public on one side to scientists on the other.Footnote ²⁵

Accordingly, TAG has previously framed state obligations to address TB under the right to science in line with Article 15.2 of ICESCR,Footnote ²⁶ which establishes the conservation, development, and diffusion of science as state obligations. By combining all three, Article 15.2 lays out a concept of access that connects state support for science (development) with the equitable distribution of the benefits and applications of scientific progress (diffusion) and efforts to ensure that these benefits are lasting (conservation). In this context, we understand conservation as meaning that the benefits of science are available not only to people alive today, but also to future generations.Footnote ²⁷ We argue that a state that satisfies its obligation to develop science without supporting diffusion and conservation has not created the conditions necessary for access.

14.3 Participation in Science Is a Prerequisite to Accessing the Benefits of Scientific Progress

Participation is one of the animating values of the right to science and is directly linked to access. Most obviously, participation in relation to science refers to the ability of scientists to engage in the scientific endeavor. But it also speaks to the ability of nonscientists – including research participants and the intended beneficiaries of science – to have a voice in decision-making about science.Footnote ²⁸ In her 2012 report, Shaheed identifies the participation of individuals and communities in decision-making about science as a key element of the right’s normative content.Footnote ²⁹ Participation is so central to the right to science that in General Comment No. 25 CESCR added the word participation to the longform name of the right itself: “Thus, it is the right to participate and to enjoy the benefits from scientific progress and its applications.”Footnote ³⁰

Participation protects people, especially marginalized populations, against scientific misconduct and the possible harms of technological development. It also creates opportunities for communities to advocate for research that addresses their needs and priorities. In order for this advocacy to be successful, communities must first find firm footing and representation among the many actors involved in doing science. In TB research, modeling the HIV approach, this representation has often advanced through community advisory boards (CABs). These groups are comprised of research-literate community members including people with TB, survivors of TB, affected family, local health activists, religious leaders, and other stakeholders.Footnote ³¹ CABs operate in an advisory capacity to research networks and sponsors of clinical trials and seek to raise community perspectives within funding bodies and scientific fora. These perspectives span issues of trial design, study conduct, results dissemination, and concerns about access to investigational technologies.Footnote ³²

When a CAB proposes a new study, objects to the exclusion of a particular population from a trial, questions the utility of a study procedure, or poses a research question to be examined, it is performing an important act of translational advocacy. This connects the objectives of scientists with interests vital to the communities for whom, and in which, research is conducted. If done well, the result is a dialogue between scientists and community representatives that produces value for both sides. For this dialogue to unfold, scientists themselves must recognize community expertise for what it is: a different way of approaching knowledge production, but one with equal legitimacy. More often, TB researchers have treated CABs either instrumentally (one common misconception is that community advisors exist only to promote the enrollment of participants into clinical trials), or have viewed them as stakeholders to placate before the real work of science can get underway. Confronting this dynamic has required CAB members to build their own knowledge of research in order to effectively advocate for community priorities with scientists on their own terms.

The experiences of two CABs coordinated by TAG – the Global TB Community Advisory Board (Global TB CAB) and the Community Research Advisors Group (CRAG) – illustrate how community participation has changed the direction of TB research. The Global TB CAB is a group of community-based activists from HIV and TB networks around the world that engages product developers, pharmaceutical companies, and public institutions conducting clinical trials of TB drug regimens, diagnostics, and vaccines.Footnote ³³ The CRAG advises TB research conducted by the U.S. Centers for Disease Control and Prevention (CDC). Both groups have employed the early review of clinical trial protocols to influence studies before they begin. In 2016, the Global TB CAB and CRAG examined their feedback on protocols for thirteen late-stage TB drug trials to identify common areas of concern and document the impact of community review. They found that study protocols routinely failed to address the following scientific and ethical concerns of high priority to communities: plans for results dissemination; post-trial access to investigational products; adequate composition (or even presence) of control arms; use of non-stigmatizing language in study documents; and the appropriate inclusion of key populations disproportionately impacted by TB, including people living with HIV (PLHIV), children, adolescents, and pregnant women.Footnote ³⁴

Community activists have made partial, but significant, progress on all of these fronts. For example, the CRAG successfully advocated with investigators planning a phase III trial of a shorter TB regimen to broaden the eligibility criteria to include PLHIV and adolescents.Footnote ³⁵ The CRAG argued that since TB incidence is higher in young people and in PLHIV, it is important to assess new drug regimens in these populations. In another instance, the Global TB CAB won changes to the protocol of the STREAM study – at the time the largest drug-resistant TB treatment trial in history – by sharing concerns about the choice of the control arm in relation to the global standard of care.Footnote ³⁶ Following this interaction, the study’s investigators launched a robust program of community engagement at trial sites and supported the start-up of several local CABs.Footnote ³⁷

What motivates the work of the Global TB CAB, CRAG, and other TB community advisory structures is the hard-earned knowledge that participation in science is a prerequisite to accessing the benefits of scientific progress. The link between participation and access is rooted in two fundamental components of participation: inclusion and reciprocity.

14.4 Creating Accountability Through Advocacy

How have TB advocates used the above framework to hold governments accountable to meeting their obligations under the right to science? Over the past three years, TAG has sought opportunities to promote knowledge of the right to science within the UN system and among fellow advocates. As is clear from the above analyses of participation and access, the right holds tremendous potential for giving new impetus to the global TB response by focusing state attention on the development of new tools and interventions with meaningful community participation and through means that ensure the equitable diffusion of these advancements. Since human rights are interrelated, interdependent, and indivisible, the right to science also provides a new lens through which activists can frame issues they have been trying to change for decades.

14.5 The Right to Science: Future Promise and Potential

If everyone has the right to enjoy the benefits of scientific progress and its applications then this enjoyment must ultimately be fought for, not just in courts but also in communities. Advancing the critical community education and mobilization required to turn the right to science from an underappreciated normative framework into a genuine tool for accountability will not be easy. Looking back at the quotes opening this chapter, and considering the above analyses, we are surprised that this right remains so under-utilized in global health advocacy. While still largely unreferenced in global public health, the right to science is slowly shrugging off its label of being a “forgotten human right,” as described by Audrey Chapman in 2009.Footnote ⁸¹ However, this emergent awareness has traveled farther in academic circles than among civil society and human rights practitioners.

In part, this may reflect the structure of the international human rights system. While the international covenants and UN bodies offer many entry points for advocating for human rights, the nature of the system can encourage specialization. Thus advocates fluent in the right to health rarely connect these issues to the right to science. Many may have never heard about the right to science before; even among scientists whose work incorporates human rights analysis, the right to science is not well-known. This is one reason why the right to health remains the trusted analytical framework for advocacy in the realm of global health, even though the right to science may be able to make more direct claims regarding the accessibility of innovations. CESCR’s issuance of General Comment No. 25 will draw greater attention by states and civil society to the right to science. We hope that it will, like General Comment No. 14 on the right to health (2000), yield new avenues for action and accountability, while enabling scholars and practitioners to begin to disentangle the right to science from the right to health.

Whether this attention leads to litigation, and whether the right to science joins the right to health as a tool for increasing access to medicines and other innovations essential for a life with dignity, will depend on mobilizing communities around the human rights dimensions of science. This will require dedicated efforts to raise awareness of the right among communities and translate its entitlements into actionable rights claims. Through efforts by TAG and other civil society actors, the right is slowly gaining more recognition in the TB response. For instance, the 2018 Declaration of the Rights of People Affected by Tuberculosis includes the right to science.Footnote ⁸² Yet even this community document, in its aim to appeal to an international audience and maintain broad applicability, uses high-level language that will require the development of additional resources to bring the concepts into local contexts so that the right to science may become a tangible form of knowledge and thus community power. Herein lies the responsibility of scholars to translate academic work on the right to science into persuasive arguments and accessible language that activists can use to create tools to turn the right from a set of promises on paper into entitlements claimed, contested, and fulfilled.

The idea of promises – which can be broken or fulfilled, pursued or abandoned – is an instructive angle from which to think about the future conjoining of science, human rights, and TB. Bharat Venkat has said that the always-present possibility of drug-resistance, relapse, or reinfection after TB treatment means that cures for TB “might be better conceived of as endings lacking finality … a promise rather than a rupture … a promise that, like all promises, can be broken.”Footnote ⁸³ Understanding TB cure as contingent rather than assured acknowledges that scientific progress cannot be taken for granted. The TB of today is different from the TB of yesterday. The scientific advances ushered in by germ theory, the microscope, the antibiotic revolution, the mapping of the human and Mycobacterium tuberculosis genomes, and other leaps forward in knowledge have given us new tools and vantage points from which to fight TB.

Our tools will need to keep evolving. Keeping the promise of cure alive will always depend on science progressing. Writing nearly twenty years ago, Paul Farmer observed: “even as our biomedical interventions become more effective, our capacity to distribute them equitably is further eroded.”Footnote ⁸⁴ If we can share the fruits of scientific advancement more equitably in the future than we have in the past, then we may move closer to fulfilling the promise of lasting cure. Promises can be broken, but human rights must be fulfilled. The right to science has given individuals confronting TB a way to bring together the development, diffusion, and conservation of scientific progress in a unified vision for ending this deadly epidemic.

14.6 Addendum – the Right to Science and COVID-19 – April 2020

We began revising this chapter as the COVID-19 pandemic reached its staggering scale, shutting down societies across the globe. Writing under lockdown from our homes in New York City and the California Bay Area, we are struck by how the right to science provides a uniquely clarifying framework for thinking through a human rights-based response to this new global pandemic. This moment in late April 2020 is likely to be remembered as the ferocious opening chapter of an epidemic of unknown length. Against this indeterminate time horizon, TB advocacy provides instructive lessons on what it will take to sustain scientific progress against COVID-19 – not over months, but years.

Past experiences from TB and HIV advocacy illuminate possible paths for translating scientific advances against COVID-19 into an effective, evidence-based, and equitable public health response. Presently, the weight of advocacy has settled on the equity proposition of COVID-19 research, or the extent to which scientific advances will be accessible to all who need them. Activists from diverse health movements have jointly called on governments to commit to making the benefits of COVID-19 research available to all without discrimination.Footnote ⁸⁵ For example, recalling that Jonas Salk refused to patent the world’s first polio vaccine or grant exclusive rights to any single company, students and artists have formed “Salk teams” to devise creative ways to pressure universities, governments, and pharmaceutical companies to make tools against COVID-19 universally available at affordable prices.Footnote ⁸⁶

Advocacy to promote the development, diffusion, and conservation of science in the TB space has prepared activists to play a watchdog role over the repurposing of existing medical technologies for COVID-19. Activists decried the high price of a SARS-CoV-2 diagnostic cartridge run on a decades-old platform developed for TB through mostly public funding.Footnote ⁸⁷ Pointing out that the innovation race against COVID-19 has proceeded without robust community engagement, over 200 organizations issued a call for greater participation in COVID-19 R&D.Footnote ⁸⁸ Several groups are now partnering to establish a global CAB to advise COVID-19 research endeavors.Footnote ⁸⁹ Based on their experience with other epidemics, these activists understand the centrality of participation for global health equity.

Right to science principles are latent within many of these initiatives. Yet, most commentaries on human rights and Covid-19 available at the point of writing – including statements by UNAIDS,Footnote ⁹⁰ scientists and academics,Footnote ⁹¹ and activists – do not name the right. Thus, COVID-19 also presents an opportunity to raise awareness of the right to science as an analytical and organizing tool. Notably, a UNDP analysis applying lessons learned from the TB and HIV responses to COVID-19 explicitly points to the right to science, particularly its underlying value of transparency “as a critical enabler of both innovation of and access to health technology.”Footnote ⁹²

COVID-19 has revealed the imperative of fostering greater international cooperation in science, of which transparency is one essential component. ICESCR Article 15.4 speaks of “international contacts and co-operation,” and General Comment No. 25 paragraph 82 explicitly references pandemics because, as we are currently witnessing, “a local epidemic can become very quickly a pandemic with devastating consequences.” States therefore should respond with transparency by “sharing the best scientific knowledge and its applications …”Footnote ⁹³ States and global agencies have put forward several concrete proposals to facilitate greater information sharing and research collaboration (though these stand against rights-denying actions by other states to control information, privatize knowledge, trade collaboration for competition, and undermine global solidarity). To take one positive example, UNESCO held a meeting in March 2020 on international cooperation in the face of COVID-19 to discuss the potential of sharing knowledge – building on its two-year process to develop a Recommendation on Open Science.Footnote ⁹⁴ Footnote ⁹⁵ Another promising example is the proposal by the government of Costa Rica – endorsed by the WHO – to establish a voluntary pool of COVID-19 patents, data, and technology that could be shared for developing drugs, vaccines, and diagnostics.Footnote ⁹⁶ We cannot help but hear echoes of the Life Prize concept for TB drug development in this proposal and hope that governments step forward to support it.

With no tests, treatments, or vaccines available at the outset of the pandemic, and with country after country struggling with similar dire situations (e.g., shortages of personal protective equipment, ventilators, testing reagents) within weeks of each other, it is clear that societies must rally around scientific progress as a fundamental human right. The future will depend on states working in collaboration with each other, the private sector, and civil society to ensure that the fruits of scientific innovation – be it medicines, diagnostics, or vaccines developed for COVID-19, TB, or other diseases – are affordable and accessible for all across the globe, just as the right to science demands.

15.1 Introduction

The human right to science has a long history. First recognized through Article 27 of the Universal Declaration of Human Rights, this right was codified in Article 15 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) in 1966. However, until recently, international bodies and scholars have not paid the requisite attention to this right. As a result, our understanding of its normative content is relatively underdeveloped. We do not yet fully apprehend its potential to bring about positive change to individuals’ lives and the communities in which they live. This right has the potential to bolster freedoms indispensable to science and culture, for example through education and through creative work. It may strengthen the freedom for scientists to collaborate and disseminate their research while protecting everyone from scientific harms.

As more scholarly attention is paid to this right, evidenced by the chapters collected in this volume, efforts must include the development of indicators to measure State Parties’ compliance with the obligations set by the ICESCR. A call to “identify appropriate indicators and benchmarks, including disaggregated statistics and time frames” is also included in General comment No. 25 on Science and economic, social and cultural rights.Footnote ¹ According to the document, State parties must develop indicators and benchmarks that will “allow them to monitor effectively the implementation” of the right to science. In general, indicators are useful in assessing whether improvements are made over time, as well as how units, such as nation states, are performing in comparison to each other. Hunt contends that human rights indicators can enable a state to assess its progress toward implementation of a particular human right.Footnote ² This is valuable, Hunt notes, to officials who can then adjust regulations and policies. Such assessments can be important when structures and processes are changed in the hopes of producing superior outcomes. People want to know whether modifications to laws and policies lead to improved outcomes. They want to know whether the application of additional resources leads to improved outcomes.

Indicators may provide evidence that changes are working, and also when they are not. Yet it is possible to place undue reliance on indicators, even to become “seduced” by indicators.Footnote ³ Experts have raised questions about the use of indicators, particularly when examining human rights. They have criticized the potential for infatuation with indicators, as well as ignorance of valuable information that can shed light on and provide evidence of compliance with human rights obligations.

This chapter contributes to this movement by proposing a set of compliance indicators in respect of the human right to science. Developing these indicators is useful given that responsibilities and duties that State Parties bear in relation to the right to science are still relatively underdeveloped. The indicators we propose are an effort to better articulate these responsibilities and duties. They contribute to advancing the discussion of the normative content of the right and potentially to how State Parties report their compliance with their treaty obligations to the CESCR. This chapter therefore seeks to contribute to the volume’s overarching objective of investigating the human right to science. Considering the right’s importance, and that it has often been overlooked by scholars and policymakers, including the United Nations, the time has come to examine it more deeply and critically.

Following a review of the emergence of human rights indicators, this chapter examines utility of, and types of, indicators for economic, social, and cultural rights. It then examines indicators in relation to the human right to science, proposing a matrix of indicators of this innovative right (see Appendix A). The chapter concludes with a discussion of the utility of such indicators. What can indicators accomplish? What are downsides to establishing indicators for the human right to science?

15.2 The Emergence of Human Rights Indicators

Human rights monitoring bodies have been recommending the use of indicators to monitor compliance with and progress towards the realization of economic, social, and cultural rights for over thirty years. In its General Comment No. 1 (1989) on reporting by States parties, the UN Committee on Economic, Social and Cultural Rights (CESCR) called on States “to identify specific benchmarks or goals against which their performance in a given area can be assessed” and “communicate them as part of their reporting duties.”Footnote ⁴ The goal of this exercise, according to the CESCR, was “to effectively evaluate the extent to which progress has been made towards the realization of the obligations contained in the Covenant.”Footnote ⁵ Similar objectives appear in the work of other UN treaty bodies, human rights special procedures such as special rapporteurs, the Universal Periodic Review of the UN Human Rights Council, and in the recommendations of these bodies to the State Parties.

The emergence of human rights indicators is part of broader interest in indicators as tools for policymaking and political decision-making. Human rights indicators belong to a particular subset of indicators, legal governance indicators, which purport “to measure practices or perceptions of good governance rules of law, corruption, regulatory quality, and related measures.”Footnote ⁶ The UNDP World Development Report, Freedom House’s Freedom in the World, the World Justice Report’s measurement of the rule of law, and the World Bank’s Doing Business Index are examples of well-known efforts to measure governance outcomes using legal indicators. Indicators of legal governance are used to measure the “implementation of human rights standards and commitments, to support policy formulation, impact assessment and transparency.”Footnote ⁷ Measuring the gap between universally acknowledged standards and implementation efforts of national governments will contribute to the realization of the human right to science. Further, because indicators can measure such gaps for different countries over various time points, researchers can employ indicators to draw geographical and chronological comparisons of efforts to realize the human right to science.

The popularity of indicators has generated interest among social scientists.Footnote ⁸ This literature describes indicators as the “technology of global governance.”Footnote ⁹ Global governance is defined as “the means used to influence behavior, the production of resources and the distribution of resources” beyond a single state.Footnote ¹⁰ According to Miller and Rose, “technologies” are mechanisms that constitute the process of governance. Indicators, scholars contend, have surged to the status of “technology” of global governance, and are used to set standards and to make decisions concerning governance matters that transcend a single state. Indicators have acquired this status for two reasons: they are efficient and consistent tools,Footnote ¹¹ and appear, at least on their face, to be inherently bureaucratic rather than political, and thus devoid of the problems and contestations typically associated with political decisions in the global arena. These two reasons explain the success of indicators, a phenomenon captured effectively by Sally Engle Merry with the expression “seductions of quantification.”Footnote ¹² Insights arising from Merry’s and others’ workFootnote ¹³ are important to place human rights indicators in historical context and assess their role in human rights discourses. However, before we turn to human rights indicators, we want to first define what indicators are.

15.3 Defining Indicators

The Office of the United Nations High Commissioner for Human Rights (OHCHR) has defined indicators as “specific information on the state or condition of an object, event, activity or outcome that can be related to human rights norms and standards; that addresses and reflects human rights principles and concerns; and that can be used to assess and monitor the promotion and implementation of human rights.”Footnote ¹⁴ An influential definition comes from Paul Hunt, former UN Special Rapporteur on the Right to Health: “a human rights indicator derives from, reflects and is designed to monitor realization or otherwise of a specific human rights norm, usually with a view to holding a duty-bearer to account.”Footnote ¹⁵

More generally, Davis, Kingsbury, and Merry, propose that an indicator can be defined as follows:

This definition captures two important aspects of indicators: they are constructs and they simplify complex phenomena. Indicators are constructs in the sense that they do not exist in nature but are designed by human beings for a specific purpose, namely, to measure performance of units of analysis in reference to certain standards. A human right can be the unit of analysis, its realization the performance to be measured.

Further, indicators try to simplify complex phenomena. Human rights are multidimensional legal artefacts for which realization depends upon the activation of various institutional domains. Indicators are tools used to reduce the inherent complexity of each human right into “units” that lend themselves to measurement. Simplification is thus instrumental to measurement. However, indicators also enable analyses of human rights that add new dimensions of the reading of legal instruments, UN bodies’ reports, case law, and related sources. This analytical level is located midway between a general notion of the normative content of human rights and how such rights operate in specific cases. Compared to doctrinal analyses, such as how human rights are codified and interpreted, indicators open the door to analyses that consider human rights less formalistically, but look at how rights are realized at a level that is closer to the rights holders and authority responsible for implementing the rights. Compared to data documenting specific violations of human rights, indicators operationalize data to permit the assessment of human rights at a more holistic level than that of specific violations. Still, experts attempt to disaggregate data to identify discrimination across suspect categories, such as by gender, skin color, or age. Such discrimination, of course, runs contrary to the quality of universalism characterizing human rights.

15.4 Human Rights Indicators and the CESCR

Although indicators have been part of the human rights reporting discourse for thirty years, their conceptualization and use with reference to economic, social, and cultural (ESC) rights is recent and relatively unsettled. This is the result of history.Footnote ¹⁷ The CESCR turned to indicators in the 1980s on realizing that ESC rights were not as developed as civil and political rights. The CESCR imagined that developing universally applicable, rights-specific indicators might bridge that gap and facilitate the development of the core content of ESC rights.Footnote ¹⁸ Consequently, throughout the 1990s, the CESCR led efforts to develop universally applicable, rights-specific indicators. At that time, the Committee envisioned its role as the producer of such indicators.

After a decade of unsuccessful attempts to develop indicators, the CESCR abandoned their goal of producing them and repositioned itself as the auditor of state-produced indicators.Footnote ¹⁹ This change in position is documented in General Comment 14, in which the CESCR stated that, as part of their treaty obligations, State Parties were required to monitor the realization of ESC rights on their own. To do so, they were required to create and use their own indicators, with the CESCR acting as the reviewer and auditor of those indicators. At the same time, the CESCR engaged the OHCHR as the expert body responsible for developing compliance indicators. After extensive consultation with international experts, the OHCHR reached a more limited goal and, in 2012, published Human Rights Indicators: A Guide to Measurement and Implementation (hereinafter “OHCHR Guide”), laying out the conceptual framework and a set of illustrative indicators with the idea that States would use them in reporting to the CESCR.Footnote ²⁰ Indicators for the right to science are not among the illustrative indicators produced by the OHCHR.

Engaging the OHCHR resulted in the transformation of indicators from political constructs to technical ones.Footnote ²¹ Based on its expertise, the OHCHR clearly indicated that ESC rights indicators must be designed and used primarily to monitor compliance with treaty provisions. Further, it distilled technical standards to which producers of indicators, such as State Parties and civil society organizations, should adhere. However, the OHCHR did not settle all questions regarding human rights indicators. The OHCHR Guide navigates with some difficulty the unsettled questions of whether human rights indicators should be universally available or state-generated and context specific. In fact, it suggests that both are true. However, this conclusion generates confusion when it comes to applying the OHCHR principles and standards to developing new indicators, as we attempt to do in this chapter. Should indicators focus on compliance measurements along dimensions that apply to all State Parties? Or should they reflect the different level of progressive realization of the right? Science is a field particularly fraught with imbalances because differences among countries’ abilities to produce scientific knowledge, partly due to variation in availability of resources that can be allocated to research and development, are staggering. We will come back to this challenge later in the chapter.

15.5 Designing Indicators of the Right to Science

According to the case study analysis conducted by Davis, Kingsbury, and Merry, indicators are developed following a three-step trajectory: conceptualization, production, and use.Footnote ²² Conceptualization requires outlining a theory underpinning the indicator followed by developing categories for measurement and modes of analyzing the data.Footnote ²³ At this stage, important choices are made that will define what is measured and how. Actors, institutions, expertise, temporality, and resources all influence these choices.Footnote ²⁴ Production entails collecting data and promulgating indicators. According to Davis, Kingsbury and Merry, promulgation is comprised of presenting, packaging, and disseminating indicators.Footnote ²⁵ Through promulgation, indicators accomplish one of their essential tasks: to represent the performance of what is measured. To perform this task, raw data must be organized and then operationalized to provide representations of the implications of that organization.Footnote ²⁶ Operationalization is the process of connecting concepts to observations of a phenomenon, which includes a case’s value on a variable.Footnote ²⁷ Finally, use occurs when indicators are accessed, consumed, and deployed by the nonproducers of indicators.

Fortunately, the OHCHR Guide facilitates the design of human rights indicators as it addresses the three stages of development of indicators (conceptualization, production, and use). Our proposal of indicators of the right to science builds upon the conceptual framework and illustrative indicators presented in the Guide.

15.6 Building the Right to Science Indicators

Before getting to the proposed indicators, it is important to state certain key assumptions of our proposal.

First, we had to define the intended use of the indicators because different uses call for different designs of the indicators concerned. We chose to propose indicators to be used primarily for compliance monitoring rather than performance monitoring. The implication for indicator design is that we follow the “structural, process, outcome” model of indicators rather than the “input, output, outcomes, impact” model.Footnote ⁵⁰ Our choice is in line with how the CESCR and the OHCHR have engaged with human rights indicators for more than two decades. We envision the proposed indicators being referenced by the CESCR when instructing states as to what they must address in their periodical reports, by States parties when reporting their progress, and by civil society organizations when drafting parallel reports. We focus on compliance monitoring because we believe this is an important function in achieving progress towards the realization of the right to science.

Envisioning indicators for compliance monitoring does not exclude their use, directly or indirectly, to achieve other objectives discussed in the OHCHR Guide. In addition to referencing them in parallel reports, human rights advocates can use indicators directly to advocate for the realization of the right at the state level and in shaping the science policy discourse.Footnote ⁵¹ Monitoring indicators can also be used directly in human rights budgeting as they identify areas (process indicators) that measure allocation of research funding. Monitoring indicators can also be used indirectly in performance evaluation to identify the inputs, outputs, outcomes, and impacts to be measured when a national human rights plan or a development program is assessed.

Second, we sought to clarify the human right standard expressed in Article 15 of the ICESCR because indicators must be grounded in, and drawn from, this standard. The challenge for us was that, as the essays in this volume amply demonstrate, the normative content of the right is underdeveloped compared to other rights – even other cultural rights.Footnote ⁵² Consequently, identifying attributes under these conditions was inherently difficult as the human rights standards that underpin the right are unsettled.Footnote ⁵³ Keeping in mind that this is, for the most part, uncharted territory, we have identified attributes and indicators based on various sources. The most important is General comment No. 25 on Science and economic, social and cultural rights.Footnote ⁵⁴ Adopted in 2020, the General Comment, General Comment lays out the general, specific, and core obligations of State parties and articulate duties connected with international cooperation and national implementation.Footnote ⁵⁵ Another important source is subsequent state practice in the application of the ICESCR. This practice is evidence of an agreement between the parties under Article 31(3)(b) of the 1969 Vienna Convention on the Law of Treaties and therefore are a source of interpretation of treaties.Footnote ⁵⁶ State practice emerges from the reports filed by State Parties as part of the monitoring process of human rights treaties, which on occasion mention the right to science.Footnote ⁵⁷ The most comprehensive source of analysis of state practice was recently completed by Yotova and Knoppers, who construct it upon reviewing all reports filed by State Parties to the ICESCR pursuant to Articles 16 and 17 of the ICESCR. A word of caution is needed in approaching state practice as a source of attributes and indicators. Since state practice emerges from periodical reports, what State Parties are asked to report is crucial. Reports are typically structured according to UN reporting guidelines, including the ones the CESCR employs.Footnote ⁵⁸ If State Parties are expected to present information on the human right to science to the CESCR, but the reporting guidelines do not request information on a certain aspect of the right, State Parties are likely not to focus on, even think about, the aspect of the right that are not mentioned in said guidelines. The same may be true for civil society organizations who monitor UN monitoring efforts and State Parties’ implementation efforts. What we are suggesting is that, if UN reporting guidelines do not instruct State Parties to present information about a particular aspect of the human right to science, that aspect may come to be viewed as unimportant to the right. Finally, we considered soft law instruments, such as the Venice Statement, which is the outcome of the gathering of experts in 2009 under the auspices by UNESCO,Footnote ⁵⁹ the reports of Farida Shaheed in her capacity as Independent Expert and then Special Rapporteur on cultural rights,Footnote ⁶⁰ and various UNESCO Declarations addressing the relationship between science and human rights.Footnote ⁶¹

Third, we considered whether to include only indicators for which data are readily available. Data availability, of course, shapes which indicators are established, and which are not. The advantage of limiting the proposal to indicators based on existing data is that the CESCR and State Parties could promptly deploy such indicators in compliance monitoring. However, when data are not readily available about a particular aspect of a right, indicators will probably not be developed. Because this problem may lead to failure to measure, absence of a measure may come to be understood as indicating that aspect of the right is not important as lacking socio-legal value. Including indicators for which data are not readily available has the advantage of broadening progress monitoring to aspects of the right that are currently not captured empirically. Based on this reasoning, we decided to include indicators for which data are currently not available, knowing that the CESCR can request State Parties to gather and publicly share this information.Footnote ⁶²

15.7 A Matrix of Right to Science Indicators

Based on these key elements of human rights indicators, we have generated a matrix that applies the OHCHR framework and follows the model of the indicative indicators published in the OHCHR Guide (see Appendix A). This matrix includes attributes on the horizontal axis and structural, process, and outcome indicators on the vertical axis.

Attributes are translations of legal standards into measurable dimensions. This means that each attribute is dependent upon, albeit may not coincide with, the legal obligations that the ICESCR creates. Our reading of Article 15 of the ICESCR led us to identify three main attributes and two secondary attributes. The three main attributes are scientific freedom, access to benefits, and opportunities to participate. The secondary attributes are the duty to create an enabling environment and to facilitate international cooperation. These secondary attributes complement the three main attributes rather than creating independent obligations. For instance, an enabling environment for science “implies inter alia academic and scientific freedom”Footnote ⁶³ and international cooperation facilitates both the exercise of scientific freedom and access to benefits. These attributes must not be construed as exhaustive of the normative content of Article 15. Although the OHCHR Guide cautions readers to identify no more than four or five attributes, more attributes can be added. In fact, access to benefits could be conceptually split into two attributes: access to scientific knowledge and access to the applications of scientific knowledge. Furthermore, access to scientific knowledge can be expanded to measure the extent to which State parties protect and foster open science practices. In our minds, the indicators we propose are meant to trigger a conversation rather than close the door to further elaboration. This point is crucial given renewed attention to the right to science, as well as evolution in science, technology and human rights.

Indicators “unpack specific aspects of implementing the standard associated with that right.”Footnote ⁶⁴ Structural indicators capture the acceptance, intent and commitment of the State to undertake measures in keeping with its human rights obligations. In relation to the right to science, structural indicators include signing and ratifying the ICESCR and its Optional Protocol. Additionally, it captures the creation of the basic institutional mechanisms deemed necessary for the promotion and protection of the right’s attributes. This includes adopting express legislative provisions to incorporate the obligations arising out of Article 15 of the ICESCR in domestic laws. Data for this indicator are partially available as they can be extracted from state reportsFootnote ⁶⁵ or derived from researching the laws of State Parties.Footnote ⁶⁶

Structural indicators of different kinds correspond to the three main attributes. Scientific freedom indicators include legislation that ensures scientists’ abilities to pursue any kind of research, to engage in self-governance (through scientific societies, respecting self-regulatory instruments, and other means), to be free of censorship and other threats to their independence, to engage in collaborations, to travel domestically and internationally, and to access funding. Structural indicators should also capture whether laws and regulations meet the requirements of “legality,” that is, to convey in clear terms what is lawful and what is not. Access to benefits indicators include legislation that ensures adequate access to scientific knowledge, translational pathways to transforming knowledge into tangible benefits (pharmaceutical drugs, innovations in the agricultural, industrial, and other sectors), and policy development mechanisms that promote the use of scientific knowledge in decision making. Opportunities to participate indicators include laws and regulations addressing discrimination in recruitment of participants in research, ensuring equality by gender and minority statusFootnote ⁶⁷ in access to scientific education and professions, promoting citizen science, and including indigenous populations and minorities in the formulation of science policy.

Process indicators capture implementation efforts to transform human rights commitments into the desired results. Evidence of these efforts include resource allocation, developing and deploying plans and programs, setting up institutional mechanisms and incentives that redress violations, stimulate compliance, and promote the realization of the right. Scientific freedom indicators include the number (total number and number of publicly funded) and quality of universities, research institutions, and scientific societies, percentage of GDP allocated to research and development, and number of professionals employed as researchers (in total and by government). Access to benefits indicators include data on enrollment in tertiary education, on access to and use of university library or the internet, quality of math and science education, and internet use in schools for learning purposes. Opportunities to participate indicators include disaggregated data (by gender and minority status) on professional and educational opportunities in the sciences, participation in research and in the formulation of science policy, citizen science, the ability to attract talent from abroad, and scientists’ participation in international conferences.

Outcome indicators measure the results of the commitments and efforts in furthering the enjoyment of human rights. Scientific freedom indicators include reported cases of persecution of, sanctions of, or political pressure on scientists (in the absence of evidence of misconduct), number and quality of articles published in scientific journals, and availability of scientists and engineers. Access to benefits indicators include aggregated data on scientific literacy, educational attainment and membership in professional and scientific societies, scientific literacy, attainment or completion of a doctoral degree or equivalent, suppression of or prohibition to divulge scientific data and/or knowledge (this could also be a scientific freedom indicator), and on innovation (collaboration between business and academia, development of drugs and other translational products). Finally, opportunities to participate indicators include disaggregated data (by gender and minority status) on scientific literacy, educational attainment, and membership in the profession and scientific societies.

15.8 Conclusions

The human right to science may be a game changer. It has the potential to reduce discrimination when it comes to learning about and doing science. This right could strengthen scientists’ freedoms to collaborate, publish, and conduct their research. It could also make possible international collaborations, which may lead to scientific advances with universal benefits.

Yet we need to know more about the impacts of the human right to science as societies move toward its realization. As this volume demonstrates, the terrain of the human right to science is vast. This chapter responds to calls for indicators of this right. Such indicators have manifold uses. Indicators will enable scholars to properly articulate the normative content of the human right to science. Indicators can be employed to assess compliance with international frameworks of human rights, which can be used to determine how nation states are performing in comparison with each other. UN bodies, nation states, and civil society actors, including watch dogs, can employ indicators to monitor implementation of the human right to science. This chapter, however, encourages experts, researchers, and leaders to maintain wariness of indicators. Although indicators are certainly useful, we must recognize their limitations, including what they do not measure. As scholarship moves forward, indicators will play key roles in understanding how science can benefit everyone.

Until now, a universal human right to science has not received the attention it should have. In the past, other rights may have seemed more fundamental, more urgent, easier to claim, and, perhaps, more straightforward to ensure. Yet a right to science is increasingly critical. Life, and planet earth itself, is threatened by climate change, global pandemics, exhaustion of mineral resources, mass extinction of species, human overpopulation, inequitable resource distribution, non-sustainable agriculture, and the possibilities of nuclear warfare, hostile artificial intelligence, and cosmic threats. Scientists of every sort are needed from astrophysicists to epidemiologists and sociologists to zoologists. Equally important: the understanding and participation of a wider, diverse public is essential if science is to effectively address these problems in line with shared social values.

A right to science has been included in modern visions of human rights, beginning at least from the compilation of rights in the American Declaration on the Rights and Duties of Man in 1945Footnote ¹ and continuing most notably through the Universal Declaration of Human Rights (UDHR) and the International Covenant on Economic, Social, and Cultural Rights (ICESCR)Footnote ² accepted across the globe and ratified by 171 nation states.Footnote ³

Then, when rights were being enumerated in the 1940s, science made possible the saving of millions of lives with penicillin, as well as the mass killing of humans and all living beings with atomic bombs. These put “Science” in the United Nations Educational Scientific and Cultural Organization (UNESCO(Footnote ⁴ and undoubtedly helped to keep a right to science among the declared human rights as many marveled at the miracles of science while also worrying about “what the scientists will do to us next.”Footnote ⁵

Now, seventy-five years later, we live in a frightful time of deaths from a global pandemic, widespread public protests about shocking social inequities, and international migration to escape political aggression in so many countries. Attention must focus on a universal right to science if we are to preserve human dignity, enable human flourishing, and address world problems. This chapter will consider what counts as science and examine two of the tensions (by no means all) built into the right to science as articulated in the UDHR and ICESCR.

What constitutes science itself has been described by ChristensenFootnote ⁶ and authors herein, but must be noted, at least in summary, in order to see the tensions inherent in the way a right to science is understood. For, science may be, at times, (1) universally objective while also being culturally relative, and (2) practiced primarily by scientists, yet also open to the public in a variety of ways.

Science is different from the arts in that the source of its knowledge typically exists with or without human observation or intervention. Music, paintings, and novels require artists. The evolution of species, the birth and death of stars, and DNA replication happen whether or not scientists study these phenomena. As ten-year-olds are taught, “the scientific method” is applied to an already existing world. There is therefore a tendency to think of scientists as researching rather than creating. Although many scientists study existing phenomena, nevertheless, most also create. They routinely create conditions for research and new knowledge, as with e-brains,Footnote ⁷ or create applications of scientific knowledge, as with rocket science, or create new phenomena, such as altered genomes, or algorithms for machine learning.

In earlier times, science was understood as a quest for truths about the knowable world, often cited in western histories as starting with AristotleFootnote ⁸ and including both theoretical and practical investigations aimed at discovering universal laws that apply at all times everywhere. The word “scientist” did not come into being until the nineteenth century,Footnote ⁹ however, when William Whewell patronizingly chided Mary Somerville (1780–1872)Footnote ¹⁰ about her writing On the Connexion of the Physical Sciences which had become a bestselling popular science bookFootnote ¹¹ in 1846. Whewell argued that the sciences were inevitably disintegrating into specialties such as astronomy, geology, physics and the like, and he offered as evidence the absence of a general name for those who study the material world in all its facets. He proposed the deliberately absurd neologism “scientists,” which began to catch on after his death as industrialists and educators sought to separate science from literature, humanities, and the arts. In the year of Somerville’s death, The Popular Science Monthly was founded by Edward Youmans “to disseminate scientific knowledge to the educated layman.”Footnote ¹² As Henry Cowles recounts in his new book on the history of the scientific method,Footnote ¹³ Youmans and the authors who wrote for his magazine, championed the actual study of things using a methodology they reified – the scientific method – and this way of thinking permeated American culture in the twentieth century. Thus, scientists observe, hypothesize, predict, experiment, analyze, conclude, and report their findings about the natural world.

Science is no longer so simple, nor singular. Taking an expansive view, the Committee on Economic, Social and Cultural Rights describes “the sciences” as “a complex of knowledge, fact and hypothesis, in which the theoretical element is capable of being validated in the short or long term, and to that extent includes the sciences concerned with social facts and phenomena.” As such, science encompasses both natural and social sciences, and refers both to a process following a rigorous methodology (“doing science”) and to results of that process in the form of scientific knowledge and its applications.Footnote ¹⁴ Thus, scientific “knowledge should be considered as science only if it is based on critical inquiry and is open to falsifiability and testability. Knowledge which is based solely on tradition, revelation or authority, without the possible contrast with reason and experience, or which is immune to any falsifiability or intersubjective verification, cannot be considered science.”Footnote ¹⁵

What, then, is this thing that scientists do? According to UNESCO, in 2017,

These descriptions of science hint at the tension between science as the acquisition and application of a specific sort of universal human knowledge, and science as a human enterprise that has its own practices, beliefs, and, we might add, its own customs, culture, and specialty tribes.

Cultural Science

Contrasting a historical understanding of science “then” with a more contemporary view of science “now,” illuminates the tension created by a basic view of science that is not only universal, but true, objective, factual, perhaps seen by some as infallible, and, hence, the best way of settling arguments about the way the world is. Indeed, some scientific findings about fluid dynamics, magnetism, the structure of atoms, genes, and other phenomena may be absolute and universal across cultures, time, and place. Nevertheless, it is also the case that other things once thought to be scientifically established are not absolute. Rather, they are refined (as with Linnaeus’ hierarchical taxonomy of living things), revised (as when Mendelian inheritance patterns were supplemented by genomic and proteomic science), revoked (as in the transition from Ptolemaic to Copernican cosmology), or rejected based on subsequent science, as when the theory of spontaneous generation of life from inorganic matter was replaced by an understanding of biogenesis.

Even empirically “proven” scientific findings, as well as theoretical science, are subject to incomplete, limited, culturally influenced perspectives and paradigm shifts.Footnote ¹⁷ There is more than ample evidence now, that scientific knowledge is incremental and often more relative than absolute. Mistakes even in laws of science believed to be universal can arise from incomplete knowledge, as in the transition from the Newtonian law of gravity to Einstein’s theory of general relativity. What may be claimed as scientifically established can also be wrong in other ways, through error,Footnote ¹⁸ misconduct (as Roberto AndornoFootnote ¹⁹ describes in this book), and fraud,Footnote ²⁰ but also, relative to its time and surrounding culture.

Culture, as used here, is a word for the way of life of a group of people, that is, the way they see the world and themselves in it – their values, beliefs, behaviors, and symbols, deeply assumed and accepted with little thought or question, and passed on by communication and imitation to members (acculturation) and new generations (enculturation).Footnote ²¹ Science can be “cultural” in two ways. First, science is part of culture – it is influenced by the culture in which it is situated, and it influences that culture as it did in the diffusion of “the scientific method” described earlier. In many modern societies, science plays a major role in shaping cultural beliefs, thinking patterns, and assumptions about the way the world is, as well as views of the people and other phenomena in it. Sometimes this occurs by gradual, unorchestrated diffusion of ideas from science into the culture. At other times, however, there is a conscious effort, by scientists and others, to use the authority of science to claim that scientific theories and evidence support a particular belief system or political goals. Secondly, science itself and the sciences have their own culture of beliefs about who may be a scientist, practices for doing science, and rituals marking scientific discoveries and achievements.

Although there are many examples of how science is cultural, perhaps one of the most unfavorable illustrations of its cultural boundedness is structural racism in academic sciences and the persistence of racist science. First, concerning structural racism, we note that the practice of science in many countries – especially who gets to do science – is, unfortunately, a mostly white endeavor.Footnote ²² Contemporary protests by scientists and their supportersFootnote ²³ are bringing belated attention to longstanding systemic racism in science, and the ways institutional culture in the academyFootnote ²⁴ and science itself privileges whiteness and Anglo-euro-centric worldviews and ways of knowing. Although Blacks comprise 12 percent of the US population, for example, they received just 1.8 percent of all Ph.D.s in science and engineering in the USA in 1987, and the number is declining.Footnote ²⁵ In the USA, for example, in 2018, the latest date for which data are available, Black residents were 12.3 percent of the U.S. population, but only 8.4 percent of bachelor's graduates, 8.3 percent of master's graduates and 5.5 percent of doctoral graduates.Footnote ²⁶ As thirteen scientists, (not one of whom is Black) on the editorial board of Cell put it in 2020, “science has a racism problem.”Footnote ²⁷

Still considering the cultural situatedness of science and widening the lens, it must be noted that three-quarters of the world’s scientific publications came from Western Europe and North America. And more than 90 percent of the Nobel laureates in the natural sciences are from Western countries, despite the fact that these countries are home to only 10 percent of the world’s population.Footnote ²⁸

The second and related example concerns racist science. Even as human rights were being discussed in many parts of the world and drafted into written documents in the twentieth century, the science of eugenics was flourishing in Nazi Germany, the USA, and elsewhere,Footnote ²⁹ aimed at improving the quality of white “races” by denigrating and removing people deemed inferior. With the help of racial science experts, physicians, psychiatrists, anthropologists, and newly medically trained geneticists, Nazi Germany developed racial health policies that involved mass sterilization of “genetically diseased” persons resulting in approximately 400,000 forced sterilizations, over 275,000 euthanasia deaths, and the near annihilation of European Jewry.Footnote ³⁰

Drafters of the UDHR will have been acutely aware of medical science gone wrong through the Nuremberg Doctors TrialsFootnote ³¹ in 1946–1947 which resulted in sixteen being found guilty and seven sentenced to death and executed on June 2, 1948. Nevertheless, Julian Huxley (1887–1975), the evolutionary biologist and Life Fellow of the (British) Eugenics Society, became the first Director-General of UNESCO and described his amended vision of “world evolutionary humanism,”Footnote ³² Footnote ³³ even as the human rights revolution brought about the UN and International Court of Justice in 1945, UNESCO in 1946, the World Health Organization in April 1948, and the Universal Declaration of Human Rights in December 1948. Still today, the search continues by some scientists for measurable biological differences between “races,” despite decades of studies yielding no supporting evidence, as science absorbs and reflects back the racism in societies in which it is situated.Footnote ³⁴

As science is part of culture, the right to take part in cultural life includes the right of everyone to take part in scientific life. Readers familiar with the field of human rights and those who have read the foregoing chapters will not be surprised, since the right to science is nested within cultural rights in both the UDHR and ICESCR. As Mylene BidaultFootnote ³⁵ explained, the right to science, contained in the right to take part in cultural life (as these together comprise article 15 of the ICESCR), is primarily a right of access to participate in science. The right to science contains correlative duties to ensure the conservation, development, and diffusion of science, to respect the freedom indispensable for scientific research, and to encourage and develop international contacts and cooperation.

It is easy to acknowledge that excellence in science requires diversity and equity, but there is far to go in achieving a diversity of perspectives in the various sciences, not only those of persons of color, but also women and LGBTQ persons, those with disabilities,Footnote ³⁶ and other members of the public. It is necessary, therefore, to examine the tension between science as done by professional, educated, expert, science specialists, and science in which the public may effectively participate. For while science provides knowledge about the way the world “is,” society is necessary for deliberating together about the way things “ought” to be.

Open Science

A universal right to science is not merely about respecting the freedom necessary for science and protecting the interests of scientists – though it is that. It is also the right of everyone to participate in that aspect of cultural life that is named science.

Passively, as first expressed in the UDHR, the right to science is a right “to share in scientific advancement and its benefits” (Article 27 (1)), and, as expressed in the ICESCR, “the right of everyone to enjoy the benefits of scientific progress and its applications” (Article 15 (1) (b)). In a time when science ranges from experiments conducted in a hadron collider to constructing artificially intelligent robots and modifying the genome of embryos, one might automatically assume on first reading that only scientists have the education and expertise to contribute to scientific knowledge. Hence, a universal right to science might be expected to relegate the rest of humanity to patiently receiving the benefits of science, as indeed some delegates argued during the drafting and discussion prior to approval of the UDHR by the General Assembly of the UN. At most, public participation would thus be primarily as consumers of science.

As Mikel MancisidorFootnote ³⁷ took care to explain, however, it is a misapprehension of the right to science to limit its scope to sharing in the benefits of science, such as the benefit of affordable medicine. Rather, as Mancisidor’s historical hermeneutic shows, the word “share” entails action, agency, and active participation. He therefore proposes that “to share in” be considered synonymous with “to participate in” or “take part in.” The right to science, he shows, “goes beyond ‘benefit from’ and advocates broader concepts of ‘participation in’; a right which includes participation in scientific creation (citizen science, or “ordinary people doing science”Footnote ³⁸), the dissemination of scientific knowledge, and participation in scientific policy, among other things.”Footnote ³⁹

A right to science that entails more robust public participation in science aligns with the original goals of the human rights drafters then, in the 1940s, and now, in the 2020s, as people in both eras aspire to enable human flourishing and peace throughout the world. Much has since been done to develop strategies for public engagement in scienceFootnote ⁴⁰ and document the value of citizen scienceFootnote ⁴¹, though much remains to be done. Two examples may suffice.

When Sharon Terry’s two children were diagnosed in 1994 with a rare progressive genetic disease (pseudoxanthoma elasticum PXE), she learned that neither their doctors nor scientists knew much about it. TerryFootnote ⁴² was a former college chaplain who had become a full-time mother, and her husband was a construction manager who had majored in drafting. Together they persuaded Harvard to let them use lab space at night and, with the informal help of generous postdoctoral students, they learned about genes and eventually built a diagnostic test and posted data on an open online consortium, called Genetic Alliance, which Sharon Terry now runs. Genetic AllianceFootnote ⁴³ offers tools to help other families, gives advice on how to do scientific research and how to become a political activist, and runs a participant owned and managed registry and biobank.Footnote ⁴⁴

The Terrys had to overcome numerous barriers to contribute as they did to science. The majority of science research is publicly funded through tax monies allocated through grants, by governmental agencies like the (US) National Institutes of Health and the European Commission, almost exclusively to science investigators selected by review committees of fellow scientists. Most science is done in academic and government settings or for-profit companies. Scientists who share their findings in scholarly articles, monographs, and books for the academic market are generally not paid to publish, and their data, findings, and publications are usually not freely available to the general public. Instead, scientists submit their work to journals and publishing corporations, such as Elsevier,Footnote ⁴⁵ who handle scientific peer review and publication, and the information is privatized and put behind a paywall.Footnote ⁴⁶ Libraries then pay an institutional fee for faculty to have access, or individuals may pay a fee per article. Sometimes authors pay publishing companies a fee as well, usually in the thousands of dollars, for their work to be freely available – typically labelled “open access”– in which case the for-profit publishing company collects fees from both the universities and authors.Footnote ⁴⁷

Given such boundaries around academic science in western countries, a second, less heartening example of opening access to science involves the young internet pioneer, Aaron Swartz,Footnote ⁴⁸ whose best-known contribution is the one that also led to his death. In his teens, Schwartz was a wunderkind involved in developing RSS (which organizes web feeds), Markdown (a simple editing language for webpages), Reddit (now a massive news aggregation site), and Creative Commons (a nonprofit copyright-sharing system). In 2008, Swartz raised concerns about the tyranny of academic publishing in an online document entitled “Guerilla Open Access Manifesto.”Footnote ⁴⁹ He wrote, “The world’s entire scientific and cultural heritage, published over centuries in books and journals, is increasingly being digitized and locked up by a handful of private corporations.” He called for sharing information openly and freely with the whole world, not just scientists, elite universities, and citizens of the First World.

As a research fellow at Harvard, Swartz had free online library privileges. In late 2010 he hooked up his computer to the internet in an unlocked, unmarked closet at MIT, and wrote a program to download articles from behind the paywall operated by the journal storage company, JSTOR, to make them freely available around the world. He was arrested and charged with breaking and entering. Although JSTOR declined to press charges, US Federal prosecutors aggressively pursued the case, charging him with eleven violations of the computer fraud and abuse act, carrying a cumulative maximum penalty of $1 million in fines, thirty-five years in prison, asset forfeiture, restitution, and supervised release. He declined to plead guilty and plea-bargain. In 2013, Aaron Swartz hanged himself in his apartment.

The interests of scientists as authors, of science publishing companies, science communities, and the wider public, are obviously in tension even though they are contained together in the right to science articulated in Article 15 of the ICESCR. The current imbalance that prioritizes protection of the material interests of scientists could be addressed in part by applying the right to science in a manner that aligns with the order of priorities as they are listed in ICESCR. Article 15 not only recognizes the right of everyone “(c) to benefit from the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author,” but first declares the right of everyone “(a) to take part in cultural life “and “(b) to enjoy the benefits of scientific progress and its applications … ” As Aaron Swartz, we, and other human rights scholars realize, redressing and restricting the “unprecedented expansion of intellectual property regimes”Footnote ⁵⁰ and profits from science applications and publishing will be necessary for science to be open and public participation in science to flourish.

One encouraging follow-up to the tragedy of Aaron Swartz’s death is the formation of SciHubFootnote ⁵¹ “the first pirate website in the world to provide free public access to tens of millions of research papers,”Footnote ⁵² Library Genesis, Open Science, and internet sitesFootnote ⁵³ that make science and other articles and books available to those who have access to computers and the internet. Access to science publications, however, is just the foundation for open science. Robust and diverse participation in open science includes not only the most widespread forms of engagement by educating the public about science, but also forms of participation that enable communities and individuals to actively participate in science and do science themselves.

The following are examples of public participation in the development and diffusion of science internationally, across cultures:

1. (1) Widespread science education both in public schools for children and adolescents, and other forums for adults to examine the latest science and its implications;

2. (2) Participating in human research as an informed, consenting, volunteer in studies;

3. (3) Donating data (e.g. Open Humans)Footnote ⁵⁴ or being a subject in large public research projects (institutionally reviewed and approved) for which individual consent may be waived;

4. (4) Serving as a member of committees, commissions and the like with scientists and funders that shape selection of problems to be studied;

5. (5) Being a community member of an Institutional Review Board or other research ethics review committee or data safety monitoring board;

6. (6) Individual (or small group) consultant, collaborator, or public partner on specific science research regarding which the public member has special interest or historical commitment;

7. (7) Embedding in science labs and research projects increasingly done by bioethicists, moral philosophers, humanities scholars, journalists, and others to provide an “outsider” perspective, identify ethical concerns prior to problems, and keep the general public abreast of scientific discoveries and their implications;

8. (8) Being a “citizen scientist” as in collecting ecological data on birds and butterflies,Footnote ⁵⁵ or mapping brain slices,Footnote ⁵⁶ or conducting one’s own science project in a do-it-yourself lab such as DIY Science.Footnote ⁵⁷

Although these may not constitute full realization of a universal human right to enjoy, access, and participate in science, they would constitute significant progress toward opening science to everyone. Further, the right to science explicitly includes the duty of “conservation, development and diffusion of science” (ICESCR 15 (2)) as well as “encouragement and development of international contacts and co-operation in the scientific and cultural fields” (ICESCR 15 (4)). This book, we hope, has contributed to meeting that part of the right to science.