Law, Ethics, and the Human Right to Science: Saying What we Mean, and Meaning What we Say

Therese Murphy ^*

• Queen's University Belfast, Belfast, United Kingdom

There is steadily increasing interest in the human right to science, stemming in part from interpretive guidance released in 2020 by the Committee on Economic, Social and Cultural Rights, a quasi-judicial UN body. Yet, how many ethics committees are using or even aware of this guidance or indeed the right itself? Similarly, how many science professionals' organizations know about the 2012 call by thethen UN expert on cultural rights encouraging them to develop their codes of ethical standards by reference to international human rights law (UNGA 2012 para 53)? My hunch is that professional organizations or ethics committees familiar with the human right to science are few and far between. I think that needs to change; specifically, I think these bodies need what I call 'human rights literacy'.Human rights literacy isn't about turning these organizations and committees into legal fora. It is about making them more open to, and curious about, the place-and the limits-of international human rights law (including its limits. This is important for three reasons: first, it acknowledges that human rights are the closest thing we have to a global ethical discourse on values such as freedom, dignity, and welfare; second, it recognizes that this global ethical discourse has a legal form-namely, international human rights law; and third, and relatedly, by taking up international human rights law in general and the human right to science in particular, ethics committees and science professionals' organizations would activate and amplify these rights. Stated shortly, by giving human rights literacy would give meaning-in-practice to both international human rights law in general and the developing human right to science into particular, ethics committees and science professionals' organizations would further both their own human rights literacy and human rights literacy more generally.As a first step towards human rights literacy, this Viewpoint examines the phrase 'law, ethics, and rights'. What follows is very much an opinion piece, grounded in my expertise in international human rights law, my experience as a member of a range of ethics committees, and my study of the literature about these bodies. I begin by describing a ricochet effect which I attribute to unthinking uses of the phrase 'law, ethics, and rights'. Then, I outline this ricochet effect in four steps, explaining why it is damaging to international human rights law in general and the right to science in particular. I conclude with a simple prescription. I teach and research international human rights law and, like many of my peers I make lots of use of the phrase 'law, ethics, and rights'; I use it in classrooms, in ethics committee rooms, and in other settings too. To add precision, I sometimes change the connector: for example, I refer to the 'ethics of rights' or 'the morality of law', 'morality and law' or 'morality or law' (Heimer 2010). At other times, I swap a noun for an adjective: for example, I refer to 'ethical lawyering', 'ethical judgments' (Smith et al 2017), or 'legal rights'. Relatedly, I often refer to human rights as a 'global ethical discourse', and to international human rights law as one form of that global ethical discourse (Porsdam Mann, Porsdam, and Donders 2020).f I use the phrase 'law, ethics, and rights' because it conveys something obvious and important: there is-and there ought to be-a relationship between ethics, law, and human rights. Yet I am also increasingly wary of the phrase. I sense that by rolling law, ethics, and rights into one phrase, we risk a ricochet that is harmful to international human rights law, including the still-under-development human right to science (Porsdam and Porsdam Mann 2021). Specifically, when invoked in relation to ethics or law, or indeed in relation to rights or equality in general, I find that international human rights law is often represented as vapid, lumpen or somehow offstage (e.g. Moyn 2019;Posner 2014). It feels, in short, less than itself. In particular, its double character-as both legal and ethical-gets lost, as does the necessity for ongoing engagement with rights in practice. In what follows I explain this ricochet effect in four steps.Step 1 'Law' vis-à-vis 'ethics' is the first step in my ricochet argument. In my experience of settings charged with ethical deliberation, law-and thus legal knowledge-is upstream or downstream, but rarely cascading through the deliberations. Put differently, legal knowledge is seen as relevant only as a trigger for the deliberations (e.g, the issue arises at least in part because of a gap or problem with existing law) or as a tool to implement conclusions reached by the deliberations, but not as a part of the deliberations. This harms both the deliberations and law and legal knowledge (Cloatre and Pickersgill 2020). Consider, for example, an approach that says law is best seen as a tool to implement conclusions reached via ethical deliberation. This approach assumes that law's role is to 'make it happen': that law is one of the forces that will bring the preferred ethical solution to life (Kirkland 2023). However, as anyone who has studied the relationship between law and social change will tell you, this is a damaging over-simplification (e.g. Galanter 1974) and sets law up to fail. It pictures law as 'on tap'. It also casts law and lawyers as having little or nothing to contribute on what ought to be; it casts them as mechanics or technicians, not as people who can, do, and should think about problems in normative ways. If law recedes in these ways, the risk to the still-developing human right to science is considerable: it will be used only in an instrumentalist way, narrowing its potential and all but guaranteeing it will be deemed a disappointment when it fails to demonstrate the levels of bindingness and enforceability that we stereotypically associate with legal norms.Step 2Other stereotypes about law, legal knowledge, and lawyers compound the problem. One example is the assumption that law's timing and science and technology's timing are hopelessly out of sync. This assumption implies either that lawmakers dawdle (which could choke innovation) or that they move too soon (which means a new law could end up regulating improbable, potentially never-to-be innovations). Another stereotype is that technology, once invented, has a life of its own: a sort of unstoppable momentum that is way beyond regulation or even moral evaluation (Archard 2023). I want us to challenge these stereotypes in order to give the right to science a chance to thrive. We need to ask: how much evidence is there for them, and are some forms of law more future-proof than others (Jasanoff 2016). The UK's pioneering Human Fertilisation and Embryology Act, originally introduced in 1990, would be ideal case study on these issues. It foregrounds process rather than seeking to regulate exclusively via rules that might rapidly meet their limit amidst technological development or unanticipated uses of technological development. More generally, case studies should help muster the both human rights in general and the human right to science in particular, giving themit a chance to get past assumptions that law is always and everywhere a laggard when it comes to governing science and technology. The just-mentioned Human Fertilisation and Embryology Act is illustrative here: the commitment pf its key regulatory body to public participation (which is integral to the human right to science) ensured that revision of the law to deal with mitochondrial donation was much less challenging than anticipated. A further illustration stems from AIDS activism, specifically the ways in which human rights claims helped to transform an initial regulatory approach that was mired in criminalization, stigma, and discrimination into a flurry of investment in R&D of antiretrovirals and major steps forward in terms of the right to access to essential medicines Another stereotype about law is that it is a 'big stick'. When this takes hold, understandings of law revolve around prohibition and freedom, which brings its own host of problems. For instance, seeing law as a 'big stick' damages international human rights law by making it seem like second-rate lawsecond-rate because it does not have the allegedly all-important enforceability element that is characteristic of national law (there is, for example, no world court of human rights). What gets occluded by the 'big stick' stereotype isn't just that law's enforceability, or influence, is a complex phenomenon (De Búrca 2021), but also that international human rights law has a particular or distinctive character as a form of law, ie, it both legal and ethical, and this makes it exceptionally helpful as a reasoning tool on difficult issues.For example, thinking specifically about the human right to science, there are lots of underdeveloped but potentially useful reasoning devices related to this right which could assist ethics committees and science professionals' organizations. The UN's 2020 interpretive guidance features some of these devices, including progressive realization and non-retrogression (CESCR 2020 paras 23-30). The guidance also makes use of international human rights law's 'right-interference-justification' structure: that is, does the action that is being restricted fall within the remit or scope of a particular right; if so, has the restriction interfered with the right; and if it has, can the restriction be justified as, for example, legitimate and proportionate? (De Schutter 2019) More generally, instruments such as the 2005 UNESCO-led Universal Declaration on Bioethics and Human Rights as well as the Organization's 2021 Recommendation on the Ethics of AI, and its 2017 Recommendation on Science and Scientific Researchers, are under-utilized jumping-off points for building interest in the potential of rights in general and the right to science in particular.Summarizing: if by invoking 'law and ethics' we end up juxtaposing law against ethics, we risk poor legal literacy and particularly poor human rights law literacy (because we miss its double character as both legal and ethical), which will damage the developing human right to science.Step 3The third step in my argument starts with a question: when we invoke 'ethics and rights', what meaning is given to 'rights'? In my experience, when juxtaposed against ethics, there is a risk that rights are seen as synonymous with freedom or liberty. This is a vital dimension of rights (and is crucial to protecting scientific freedom (Porsdam Mann et al 2023)), but standing alone it is a radically narrow and incomplete account. International human rights law includes freedoms, but it also includes entitlements and obligations or responsibilities. This is clear from even the most cursory reading of any international human rights instrument from the 1948 Universal Declaration on Human Rights onwards. It is also evident in UNESCO's 2017 Recommendation on Science and Scientific Researchers, which has a section dedicated to the rights and responsibilities of researchers. It is vital that this understanding of rights as freedoms and responsibilities cascades through ethics committees and science professionals' organizations-vital, for example, so that future recipients of EU Horizon 2020 funding do not return similar results to a recent survey which showed that a vast majority of respondents were not familiar with the concept of Responsible Research and Innovation (Bührer et al. 2018). Ethics committees, with their long history of limiting scientific freedom in order to protect the rights of human research subjects, seem ideally placed to reinforce this core understanding of human rights as being about both freedom and responsibility, provided they remain alert to rising levels of threat to legitimate forms of scientific freedom by both state and non-state actors.Seeing rights only as a freedoms is also misleading because it obscures what human rights lawyers call 'justified interference' (De Schutter 2019). The human right to science, for example, can justifiably be limited in accordance with the standards set out in the international instrument in which it is found, namely the UN Covenant on Economic, Social and Cultural Rights. Article 4 of that Covenant provides first that limitations on the right to science have to be determined by law; second, that they must promote 'the general welfare in a democratic society'; and third, that any restriction must be compatible with the nature of the right restricted. We risk obscuring this vital dimension of the human right to science (CESCR 2020 paras. 21-22) if we see rights only as freedoms or liberties. Relatedly, the 'justified interference' framing used within international human rights seems an excellent tool for ethics committees and science professionals' organizations when faced with advising on difficult issues.There is a further issue. If rights are treated as synonymous with freedoms or liberties, we risk obscuring equality and non-discrimination as part and parcel of international human rights lawwhether as rights in themselves or as cross-cutting principles in this field of law. There are hard questions to be faced about equality and non-discrimination in a world beset by increasing inequality (Fredman 2022), but these questions are not best addressed by cabining rights as freedom or liberties and partitioning equality from international human rights law (De Búrca 2018). Any sense that human rights are about freedom, and not about equality, would also be particularly damaging to efforts to use the human right to science to support women and girls in science and technology (CESCR 2020 paras. 29-33).Step 4The fourth and final step in my argument focuses on international human rights law) vis-à-vis ethics. I have found that in professional or scholarly ethics fora where I introduce myself as a human rights lawyer, I am sometimes questioned by people from other disciplines about the lack of theory in international human rights law. This could simply be a way of marking territory; an expression of the importance of boxing off 'the lawyers' before they try to put themselves 'on top', not just 'on tap' (Ashcroft 2010). Still, I find it unsettling (Murphy 2018). In particular, prioritizing theoretical underpinnings risks obscuring the dynamic and iterative character of international human rights law in practice (De Búrca 2020)-including the ways in which human rights as a global ethical discourse are taken up by people and groups advocating for positive change. including the ways in which the human right to science as a global ethical discourse is being taken up by scholars, organizations, and citizen scientists advocating for and amplifying its role as 'an ensemble of "scientific rights"' (Besson 2024, my emphasis)-encompassing a participatory dimension for all of us to contribute to, not just benefit from, science (CESCR 2020 paras. 10-11). The question that arises is: what now? What's the way out of the tangle that can be created by invoking 'law, ethics, and rights'? And relatedly how do we move towards human rights literacy on the part of ethics committees and science professionals' organizations so that both the right to science and more broadly a human rights-based approach to science can be institutionalized as part and parcel of 'good science'? I suggest we borrow a framing device that has become popular in discussions about the rights of future generations: the device is an empty chair. In the context of the rights of future generations, the chair signals the need to consider the rights of future people in decisions being taken today. It obliges us, if you like, to be good ancestors.I think the chair could be repurposed in the context of ethics committees and science professionals' organizations, where it would be a reminder of international human rights law as a non-obvious but deeply relevant stakeholder. The empty chair, in short, could be a threshold gesture, a way to move towards human rights literacy, including the realization of the neglected potential of the human right to science. Keeping this human right at hand has long been challenging. By the simple device of an empty chair, that tradition could be reversed, stereotypes about the relationship between law, ethics, and rights could be challenged, and the right to science's meaning in practice would develop through the day-to-day of ethics committees and science professionals' organizations, which in turn would feed into state reports to the UN Committee on Economic, Social and Cultural Rights, thereby helping to generate consensus on this right. The author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. Thérèse Murphy is the sole author. The views expressed are the author's own; they do not represent the views of any ethics committees of which she is or has been a member. The preparation of this Viewpoint was completed during my tenure as Raoul Wallenberg Visiting Chair in Human Rights and Humanitarian Law at Lund University. I thank the Marianne and Marcus Wallenberg Foundation for funding the Visiting Chair and the Future of Human Rights project of which it forms part.