key: cord-0929098-7loab74f
authors: CAPPS, BENJAMIN
title: Where Does Open Science Lead Us During a Pandemic? A Public Good Argument to Prioritize Rights in the Open Commons
date: 2020-06-05
journal: Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees
DOI: 10.1017/s0963180120000456
sha: d5af67b795b30fa612464d90713062b118883dfb
doc_id: 929098
cord_uid: 7loab74f

During the 2020 COVID-19 pandemic, open science has become central to experimental, public health, and clinical responses across the globe. Open science (OS) is described as an open commons, in which a right to science renders all possible scientific data for everyone to access and use. In this common space, capitalist platforms now provide many essential services and are taking the lead in public health activities. These neoliberal businesses, however, have a problematic role in the capture of public goods. This paper argues that the open commons is a community of rights, consisting of people and institutions whose interests mutually support the public good. If OS is a cornerstone of public health, then reaffirming the public good is its overriding purpose, and unethical platforms ought to be excluded from the commons and its benefits.

For some, the ongoing Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-Cov-2) pandemic has "reaffirmed the urgent need for a transition to open science." 1 "The real antidote to epidemic is not segregation, but rather cooperation," 2 so that open science will accelerate societal and economic progress. 3 Across the globe, open science (OS) is enhancing evidence-based nonpharmaceutical measures, and equitably contributing to scientific and clinical responses to the pandemic. 4 Although OS has come to mean many things, 5 this paper is a critique of the concept that all scientific knowledge resides in an "open commons." 6 OS is preferable to a competitive, secretive, and proprietary scientific culture; 7 however, the veneration of data idealism under the "new" commons obscures potential abuse of OS, too. 8 First, the pandemic has become a false panacea for OS in the unprecedented application of big data and fast science, leading to hurried and expedient publication, rather than prudent protocols, to support public health. Critics, however, point out that much of the information is not vetted, noisy, and can be socially and politically distorting. OS's chaotic application is contributing to negative social determinants of fairness and equitability, in respect to whom the data is about, who can use it, and ultimately who controls it. 9 Second, OS has become an end-in-itself, so its purpose to support the public good has morphed into surveillance that bleeds into social control and profiteering. Of these requires obligations to use it ethically. Focusing on the question of markets (rather than surveillance), this paper attempts to keep OS as a cornerstone of public health, and therefore reaffirms the public good as OS's overriding purpose.

During this pandemic, OS has become central to sharing data about the SARS-CoV-2 and clinical nature of COVID-19. This exponential growth of real-time information has been used directly to justify public health policies. OS is not new to this pandemic, however, and its narrative has a distinct ideology which could have an impact on how we emerge from this time.

The contemporary idea of OS comes from a nebulous background: it has origins in history, 18 social convention, 19 jurisprudence, 20 and ethics. 21 These ideas represent different heritages about what constitutes favorable conditions for social innovation. Today, OS is principally positioned as a response to the unprecedented production of data-too quickly to be contained and too much to be constrained by solitary users-and a realization that misuse of proprietary models can discourage socially valuable innovation. 22 OS, therefore, began the gradual normalization of open access journals as a benchmark for scientific dissemination, and has since become a movement to advocate for a new "open commons" to underpin all parts of the research process. Colloquially, OS is about removing barriers to scientific knowledge, and, as such, it has supported creative models that prioritize better and faster access to science for anyone who wants to use it. OS is meant to remove structural obstacles to reporting and dissemination, and thereby optimize socially valuable practices (e.g., "open access," "open data," and "open source"). 23 Numerous funding agencies and governmental institutions stipulate ethical conditions like transparency and fairness, confident that opportunities stemming from OS will be socially equitable. 24 Some industry-based individuals and institutions have integrated OS into their work ideology. 25 It is also anticipated that publics, such as users, research participants and patients, will share their data too. 26 To this end, OS is interconnecting all domains of scientific record-keeping, archiving, discovery, and innovation, and has taken root in the community ethos underlying citizen science and crowdsourcing.

Primarily, OS maximizes efficiencies in the knowledge economy by reducing proprietary claims on intellectual property and promoting co-created knowledge. Doing so enhances international and interjurisdictional cooperation on fair data creating, access and use. There is evidence that OS benefits researchers through recognition, partnerships, and enhanced data access. It ensures critical review and reproducibility, and opens up scientific culture to social scrutiny and thereby reinforces the scientific method (i.e., advocating holistic creation and stewardship of knowledge). 27 OS may become a cornerstone in clinical practice, enabling diagnostics and cures using patient records across vast places and time. 28 In public health, realtime data analytics enables rapid and equitable responses to pandemics. 29 Although OS culture may be a result of compromises, paradoxes, and surprises, it now seems to be the latest bandwagon; yet the reasons to jump on it may not always be compelling. In the context of this paper, OS raises concerns about the contexts it creates for excessive scope for monitoring 30 and control (e.g., classification, profiling, and ultimately manipulation). 31 OS-premised on big data-also opens up many other controversies 32 : the data is messy, noisy, and often irrelevant, and Where Does Open Science Lead Us During a Pandemic? 3 creates ideal conditions for creating falsehoods and misleading perceptions to influence public policy. That raises further challenges for legitimate evidence, especially in situations where rapid publication compounds long-standing problems such as effective peer review and scrupulous communication of science. 33 By necessity, technology-based sociality (the online world) forces us to leave our digital footprints everywhere; these can be (falsely) incriminating or exonerating, embarrassing, and harmful-if-known. It is difficult to hide or cover those tracks, and the millions of data points they reveal are easily harvested 34 and assimilated into research without consent. 35 Patients lose control of data, as it is sequestered under conditions that refuse further access, and patients are denied use of, or exploited for access to, end products. 36 Bona fides scientists may be held responsible for disingenuous use of their data, and experience the backlash when someone else openly gets it wrong. 37 The conditions for OS can theoretically preclude ethical scientists opportunities if they are concerned about specific circumstances of how data will be used; moreover, the imperative to take part denies researchers control over their hard worked-for data, and also makes them obedient to signals from the market. This milieu simultaneously undermines and celebrates "experts" and displaces scientific professionalism and the scientific method: experience and qualifications can be replaced by familiarity with particular forms of social criticism and popular debate, and therefore scientific authority and professional responsibility are won or lost depending on ideology. Strategic promotion of the "citizen scientist" also makes a mockery of their years of training, and questions experts' claims to have authority. 38 Finally, in the open commons, as we shall see, data created under ethical conditions for the public good, such as medical health records, can be acquired under a social pretext, capturing its benefits for traditional and novel market economies. 39 These possibilities erode the ethos of communal science. 40 The capitalist platforms seemingly leading this are knowingly impacting on public health: their acquisition of data relies on freeriding the open commons, using OS to create a competitive advantage, but then implementing proprietary rules to protect their interests.

In the earliest of at least three phases, OS emerged as a movement to maximize practical conditions for fruitful collaborations and enhanced sharing. Proponents talked about unprecedented knowledge generation and imagined that incredible transformative discoveries were imminent. 41 This new way of doing science would be transformative, so it became necessary to define ethical conditions for data deposit, access, and use. One of the key challenges became the tension between maximizing innovation, on the one hand, and respecting autonomy, on the other. The argument turned out to be comparable to the utilitarian reasoning underlying primitive ideas about public health, where collective wellbeing (a good in itself) may conditionally trump rights. 42 Thus, OS proponents appealed to "the public interest" to explain an innovation-based critique of autonomy that justified rescinding rights for the greater good. 43 In this respect, proponents may acknowledge the problems of the unproven OS research paradigms practiced by capitalist platforms, but nevertheless remain positive about the capacity for society and jurisprudence to evolve an appropriate balance, that is, in respect to promoting innovation, but still having expectations about privacy and confidentiality. They argue that research Benjamin Capps 4 participants and patients must adapt to this sea change too, despite the risks to their rights, because on balance they benefit from the innovative opportunities of OS. 44 This view, however, shares the commercial function of "capitalist platforms," and therefore cannot stop economies from undermining the communities they claim to serve.

"Social openness," illustrated by uninhibited social media use, has increasingly normalized capitalist platforms. 45 All the while, these platforms have gained further footholds in providing essential social services, often changing them into devices of capitalism. Within OS, there have been few questions raised as to whether these business models provide the most efficacious approach to data management in public health circumstances, 46 and some have forsaken concerns about the ethical appropriateness of private interests taking part in providing public goods. 47 OS, in fact, creates a self-sustaining context for limitless data, and that data has become extraordinarily valuable now that the mechanisms for extraction and exploitation are in place: big data is a naturally, freely, and effortlessly self-propagating good, requiring little more than strategic mining. 48 The "new oil" has become ascendant as a unit of capital for market engines. 49 In this respect, the "extreme concentration of wealth means an extreme concentration of power," so that the capitalist platforms have become extraordinarily influential. 50 As our wellbeing has increasingly shifted online, that space has become a progressively attractive one for enhancing entrepreneurial freedoms, extending beyond core businesses (social networking and e-commerce) into providing basic services such as health care. Meanwhile, there has been a global capitulation to neoliberal values, presenting an opportunity to keep the state in a subservient role of merely preserving institutional frameworks appropriate to market practices. 51 Free market capitalists therefore imagine OS supports laissez-fairism: it lacks government interventionism (i.e., strict control over data) so is conducive to the kinds of liberalization that promotes capital generation. 52 OS also organizes society through voluntary and community activity, cooperation, civicness, networking, and social capital: these are easily exploited for their production of vast and free data. So, if there is any truth to a sociological view that "privacy is dead," 53 then OS is an ideally "lawless" space to capture the public good. 54 The social work is freely done, allowing the platforms siphon off a rent from every transaction they facilitate.

This neoliberal ruse is exemplified in a critique of "Surveillance Capitalism" 55 or "Dataveillance" 56 : the "unexpected and illegible mechanisms of extraction and control that exile persons from their own behavior." 57 Although many remain wary of the surveillance narrative (what will health apps be used for after the pandemic?), we seem less concerned with those who opportunistically clearcut the public good through its capture, using an "inherent political asymmetry …[and] in fact a posteriori private expropriation." 58 OS risks opening the door to exploitative practices, 59 conflicts of interest, 60 and poor data security, 61 under a vague conjecture about the public interest. 62 The potential consequence of doing so takes us further down the path to dystopia: we become imprisoned but "happy consumers"-homo datus or data avatars, content (perhaps) to be counted, analyzed, and surveyed. 63 Big data, bioinformatics, and AI combine to create artificial identities, replacing our dignity with a price to know everything about us. In this form, persons have insufficient knowledge about what is known about them and little ability to control how it is used. 64 The problem is not necessarily the monolith of state or the forces of innovation, but them acting together in a neoliberal adaptation of the role of public health. In so doing, public health now serves a public interest in strong economies.

Where Does Open Science Lead Us During a Pandemic? 5 Seen this way, OS makes communities more surveilled and potentially less free, paradoxically at odds with the intent of the open commons. 65

Perhaps as a result of the blurring of public health and capitalist agendas, in the second phase of OS, proponents have organized the movement into an "open commons." 66 The open commons has become more than the aggregation of data; it shifts OS arguments from "intellectual property or confidentiality restrictions," to the "fundamental shared nature of the genomic commons." 67 Given the right context, there is an ethical obligation to take part in these communities situated in both research and healthcare contexts. However, we are permanently connected through our household economies, education, work, use of the health system and social services, and all our real and virtual socializing. These circumstances perhaps entertain a contemporary "right to the internet," especially when the circumstance of a pandemic befalls a society. The open commons therefore signifies a continual connection between our being and with very large data, both created spontaneously (i.e., by social media use, as well as other nonprofessional activities) and by structured initiatives such as health care, biobanks and specific analytic websites, for example, genetic and virological. The data is shared between traditional networks of local, regional, and international research infrastructure and hubs, 68 as well as real-time database apps, platforms, and archives. 69 Thus, following Elinor Ostrom, the open commons has become a massive "common pool resource" rather than a public good; data is a resource that may be decreased through consumption, and exclusion is possible, necessitating complex (and ethical) rules for deposit, access and use. 70 This "New Commons" still presupposes a community coopted for the good of science, but its people are compelled to give up some of their interests without expecting immediate gains or fearing instantaneous harms. 71 This may be explained by an antecedent view-which contains elements of Robert Merton's "Communism"-that a culture of sharing underlies all fruitful collaboration and equitable transfer of legitimate goods between citizens and scientists. For example, the total aggregation of accessible genomic data (across many institutions and resources) is referred to as the "genomic commons" 72 : that is a community of liberal citizens and public scientists working with their industrial counterparts, who are equally committed to the values of OS. 73 In this respect, OS fosters behavioral change in those who habitually conceal their data. In reality, these relationships require "tiered access" that assesses individuals or organizations, and grants them specific data-use conditions. 74 The commons, however, has become a place to influence social and political discourse. For example, the case may be made that if the open commons is in the "best interests" of people, 75 then it also creates a space for the specific interests of a sector that stands to profit from exploiting its co-inhabitants. 76 However, neoliberalism also applies to the kinds of entrepreneurial "experiments" currently undertaken in the open commons. A particular example is the emergence of "open research"often bypassing ethics scrutiny 77 -that blurs principles of research integrity with the social and economic critiques of big data. Big data research not only uses data voluntarily provided (sometimes) and spontaneously harvested (with or without persons' consent), but its researchers have no qualms about using data that is secretively or disingenuously gathered, because there is an competitive advantage in doing so and it comes with few penalties (and powerful advocates). 78 In the background to these researches, there is an unfettered market where neoliberals may opportunistically capture public resources: commodification transforms a market economy into a market society, in which the solution to all manner of social and civic challenges is "the market" itself. 79 That is more worrisome, because the OS consensus generally falls on publics to be players, and public institutions to support it, rather than being obligatory or reciprocal on the private sector. 80 In that regard, production of data has complex, mostly public but sometimes private origins, so that OS idealism may be used to deliberately weaken those institutions operating "for the public good." Doing so creates ideal circumstances to generate public bads that prospectively obstruct or reduce social opportunities: captured goods may become disruptive commodities. 81 In the current narrative of OS, privacy may not be the only right we stand to lose by the subversion of the commons, 82 as access and use of both legitimately and surreptitiously obtained data 83 not only affect persons' freedom and wellbeing, but may undermine the commons by promoting illegitimate interest. These possibilities stoke criticisms about the corporate abuses of data, 84 which could weaken our response to the Covid-19 pandemic and ultimately reduce the effectiveness of public health.

In this third phase, proponents have attempted to move away from utility-based arguments, to define a more complex ethical environment that frames OS as a "human right to benefit from the fruits of scientific research." 85 Significantly, our existence in the commons is both essential (as sociable, cooperative beings) and unavoidable (as perpetually online beings), so that its moral governance requires a rights framework. In this respect, the "right to science" includes an untrammeled obligation to share, and a social contract involving trade-offs that are neither necessarily mutual or correlative, so that the open commons becomes critical, as well as supportive, of the conditions for freedom and wellbeing. 86 Finding out where that right sits between autonomy and the public interests requires tracing it back to its roots in international conventions, where we find that right is anchored to equal dignity, self-realization, and substantive freedoms.

Thus, the right to science must include the right to consent to scientific experimentation. That right is fundamental to the integrity of science, and the development and diffusion of ethical technologies; that is, it protects persons from science misuse. 87 The "right to science" is simultaneously a veneration of good knowledge as a "public good"-a resource for the realization of human rights 88 -and also limited by fundamental obligations to "human dignity." 89 The correlation of the public good and dignity inevitably creates a tension between "the public interest" and autonomy; but since recognizing the atrocities of mid-20th century committed by doctors and scientists, autonomy has been clearly favored over the public interest. Without that correlate, the right to science, as a disambiguation of an obligation to share, yet lacking stable protections of freedom and wellbeing, is on shaky ground. 90 The ground becomes firm only if the right to science is within a hierarchy of obligations. Foremost there is the protection of basic rights (as formulated, e.g., in the Nuremberg Code), which later evolved to include a right to receive reasonable technological benefits. The basic rights create a correlative obligation to a prima facie positive right to privacy as well as a negative right to be "left alone." 91 Next, the public interest promotes rights in the sense of general welfare-that is what tells us what is good Where Does Open Science Lead Us During a Pandemic? 7 about the commons-and promotes opportunities to enjoy second tier rights, proportional to the tension between diminished freedom and prospectively enhanced wellbeing. 92 Last, there is a right to engage in ethical science. Although we may all "enjoy the benefits" of science, it is clear that citizens, whether they take part in its creation or revel in its progress, also have a choice in both respects; that choice is a freedom from an unjustified public interest. 93 What I have just described in brief terms is a "community of rights," in which an egalitarian conception of solidarity promotes OS as mutual and cooperative, rather than secretive, manipulative or competitive. 94 Therefore, the kinds of research conducted in this space must be bona fides, which excludes activities that prospectively obstruct or reduce social opportunities (i.e., public bads) and precludes capture of public resources. The ethical commons, therefore, is conditional on the technical examination of "the public interest" in terms of the public good and legitimate rights. 95 There can be no duty to take part in OS without careful consideration of the public good; and, as such, we can reasonably opt out of taking part in research that foreseeably harms us. 96 Moreover, the public interest creates obligations for institutions: innovation is an ability to make use of new scientific knowledge, but also a capacity to put it to use creatively and ethically to help solve broadly social problems. In general, candidate institutions must first commit to a normative principle of institutional responsibility. 97 This principle stipulates that they observe the meaning of the public interest as an "indirect" form of a social contract to promote the public interest in welfare. 98 Such an application of rights theory means that they are practically as committed to equally respecting equally the rights of people in the commons as they are to their shareholders. Responsible institutions protect rights and interests jointly by including procedural requirements for ethical associations and partnerships and establishing instrumental governance. 99 All this requires a regulatory response focused on the OS sector as a whole, since it is not always easy to separate research or practice into distinct private, public or not-for profit forms.

Institutional responsibility also requires that public-private industry occupancy of the commons be ethically symmetrical. The onus also falls on prospective partners to provide reciprocal openness, so that its intentions become transparent in respect to why it collects data and what it is used for. 100 Ethically, participating private industries must contribute corporate data to the public good, too, just as legitimate public bodies do. Private institutions should compensate the open commons, so as to preclude freeriding on costs incurred by other people; that premium can be adjusted in respect to their adherence to these conditions. Finally, these conditions should be spelled out in specific "data collection" and "data use" rules that are externally enforced, and there should be oversight in respect to applying norms of research ethics. 101 We can learn a lot from nuanced approaches to OS such as that of UK Biobank: it stipulates that its purpose is for the public good, so that its stewardship over data is conditional. The data it contains is never truly open, but is accessible to all bona fides researchers, whether public or private, on the conditions that data is returned to the resource and "unreasonable" patents are precluded in any future invention. 102 Like UK Biobank, the open commons may exclude those who attempt to capture goods or create public bads. 103 Alas, although there are industries volunteering to use this approach already, in general joining the commons for them likely requires a comprehensive sea change to alter course from a speculated social cataclysm of post-pandemic capitalism. 104 

The current OS narrative potentially underestimates the opportunities for surveillance capitalism during a pandemic. Enthusiasm for innovation, the open commons, and the "right to science" continue to conflate ethical conditions for bona fides research with capital purposes. This mistake has become an opportunity to undo rights protections, as OS proponents cannot set effective ethical conditions for data access and use: OS avails all possible scientific data for anyone and everyone to access and use for any purpose. Ethical OS requires a far more cautious approach in respect to how society emerges from the pandemic: new data, as well as new technologies (i.e., AI) and tools (open source software), even if used ethically now, will become resources able to be used beyond the purposes, and protections offered by, public health. 105 Despite trust in some legal safeguards, 106 OS has also become an opportunity for capitalist platforms to provide many essential services based on public health's legitimacy of surveilling peoples' health. This paper, therefore, provides some evidence that the protections afforded to persons may be rolled back under the "new commons," and that could undermine the essential provision of public goods. If we begin to imagine OS as simply knowledge generation qua innovation, without establishing ethical norms, as well as legal protections, the conditions for the public interest can quickly become ambiguous in respect to the public good. This conclusion may be resisted still, because there is likely little social appetite for returning to times when science was more of a proprietary activity. But it will not do to remain ambiguous or ambivalent to the influence of surveillance capitalism.

The open commons is not only data. It is a patient's expectant diagnosis, a community that provides care and future welfare, and it is where worthwhile research is done to promote public health. It is also the social space where much of our lives has shifted to during the COVID-19 pandemic. These activities are underpinned by the public good, which establishes fundamental obligations on individuals and institutions that, at times like these, are necessary for an effective pandemic response. 107 In the community of rights, the freedom of the commons is given to friendly participants, donors or altruists, and their exclusion from its benefits is unethical; people are free to come and go. The egalitarian response to a potential the tragedy of the commons, brought about by misplaced trust in capitalist platforms, is to exclude those that "follow strategies that destroy the very resource" itself; 108 and recognition that the threat from open data use is "so sweeping that its can no longer be circumscribed by the concept of privacy and its contests." 109 The worthy ambitions of ethical OS need safeguarding by expanding the narrative to the existential challenges of our time; it has become evident that the emergent OS ecosystem is not sufficiently equitable, and encourages activities that actively reduce socially valuable outcomes. Past examples of the untrammeled use of data (most recently, in political campaigns) raise concerns about the extent of data held about persons, and how that data can be manipulated and in what ways and for what purpose. The current OS narrative does not go to the root of these concerns about the breadth of information needed and available to make sophisticated predictions about people, and ultimately, the consequential decisions made that limit their freedom during a public health crisis and beyond. A new sense of solidarity in the open commons is one of the few reassuring things to have happened during this pandemic, and through experiencing degrees of alienation, illness, poverty and sadness during the pandemic, communities should not be exploited by entities compelled by old-fashioned, anti-community ideas of neoliberalism.

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A similar process, it should be noted, has left persons without control over cells and tissues taken from their body

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That project's efficacy relied on a new code that ensured a secure connection and tracked the researchers' actions. Arguably, that permitted them to legitimately interrogate the public good, that is they accessed, without consent, the National Health Service health records of British patients as credible "public health servants" and subject to British law. The code that enabled them to do so has been made available as open source. OpenSAFELY Collaborative. OpenSAFELY: Factors associated with COVID-19-related hospital death in the linked electronic health records of 17 million adult NHS patients

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Acknowledgements: An early iteration of this paper was presented at "Open Science: What Do We Need to Know to Protect the Interests of Public and Scientists?," a workshop jointly presented by the HUGO