In the early months of the COVID-19 pandemic, #followthescience was a much-used hashtag. Its message seemed simple and profound. It suggested a way to curb both over- and under-reach by governments and others. More broadly, it suggested process and accountability. It signalled the harm of misinformation and the importance of having something to trust. It also signalled hope—in particular hope of a vaccine and treatment.

Over the intervening months, #followthescience seemed to fall away. In part, it narrowed to claim and counterclaim around the ways in which governments were handling the pandemic. In part too, we stopped believing in scientific quick-fixes: we learned that vaccines in particular don’t appear or get distributed on demand. Mostly however, #followthescience fell away because we learned that its message is not as simple as it appears. Specifically, we learned that its message needs to be critiqued, and this needs to be done with regularity not as a one-off.

GC Human Rights Preparedness wants to join this critique: we see it as an important part of our work on a human rights-based approach to pandemics and other emergencies. Here’s how we explained that in our launch post:

we should not leave … science standing apart or alone. If we want science to be ‘good science’, engagement with human rights needs to be part of science’s everyday, not just a matter for times of crisis.

Curated #1: Science, human rights and pandemics
Following up on that aim, our first Curated series engages with the relationship between science and human rights. Its topic is science, human rights and pandemics, with particular reference to COVID-19.

Every Monday over the coming weeks, there will be a post on some aspect of this topic. This week’s post is by Katharine Wright and Sharifah Sekalala; Katharine led the Nuffield Council on Bioethics’ project on research in global health emergencies, and Sharifah was a member of its international working group. Next week’s post will be by Mikel Mancisidor, who is a member of the UN human rights treaty body, the Committee on Economic, Social and Cultural Rights. Mikel will be writing about the Committee’s guidance on science and economic, social and cultural rights.

Today, at the series' start, we offer two questions about #followthescience, and a comment about how pandemics end.

Good science stands neither apart nor alone

(1) What science?
Our first question is: what science? In other words, what science or sciences are we to follow? Relatedly, what sciences have been followed, in what ways and with what effects thus far in the COVID-19 pandemic?

Some risks are easy to see. One is that the wonder of some sciences can leave us flat-footed, waiting for silver bullets, moonshots and white horses. We pin our hopes on vaccines and we forget what Devi Sridhar calls ‘the hard slog of public health’.

Another risk is that we forget there are divides within sciences—different views on ‘good science’ and relatedly different philosophies of knowledge. The problem with forgetting this is not that there are iron cages: enabled by both scientific freedom and scientific responsibility, individual scientists will generally have scope to work across divides about what counts as ‘good science’. Rather the problem is scientists’ ability to do this when working at ‘pandemic pace’, and also their ability (and ours) to see that using their science advice in decision-making is about values, not just about facts.

Our sense of awe at wonder sciences can also lead us to neglect other forms of science. We should for example be talking about citizen science, in part because human rights includes ‘not only a right to receive the benefits of the applications of scientific progress, but also a right to participate in scientific progress’.

We should also be talking about the social sciences: they too need to be part of pandemic planning and response. Sheila Jasanoff reminded us of this in April 2020 when she pointed to a trend towards modelling the progression of COVID-19 but not its social consequences. This makes her one of a growing group who describe the pandemic as both biological and social, and its challenges as both scientific and social. Their aim is to act as science critics (in the positive, constructive sense of that word), including by reminding us that science—whether that is virology or economics—is neither value-free nor certain. Scientific facts involve value judgements, and values are also in play when policy-makers take decisions based on scientific facts.

(2) To follow?
Turning now to our second question: what does it mean to ‘follow’? More specifically, amidst COVID-19, is there a risk that we lose the ability to be science critics and more broadly, to be part of science work?

Crucial choices are made upstream in science work: choices, for instance, about the intention of a particular study and what to research and in what ways. In the context of a pandemic—a health emergency—when research is an imperative, the need for upstream choices does not disappear. And the choices that are made can have far-reaching effects on individuals and groups, and on what international human rights law describes as the accessibility, availability, acceptability and quality of science’s applications.

In science work, choices are also made about research culture. Projects to reimagine these cultures —to make them creative, inclusive and honest—are ongoing. One important question for us concerns the role of human rights in creating and sustaining better research cultures. And part of what we want to look at here, and more broadly, is the relationship between ethics, human rights and law.

It’s not just about science work, however. We need access to what the science says—we need access to the evidence. We also need lucidity about the part that values play in decision-making. In broad terms, this is about trustworthiness. More narrowly, it is about the ways in which science advice is sought, given and used, including what sciences dominate science advice and who takes responsibility for thinking about, monitoring and, if necessary, compensating for harm and learning from mistakes.

Pandemic endings
Part of the appeal of #followthescience is that it conjures hope. It speaks to an endpoint to the COVID-19 pandemic; if we follow the science, the pandemic will end. But how do pandemics end?

At this point, international lawyers might note that law is just like us: it likes endpoints. They would also note that the question of when pandemics and emergencies end is under-explored in legal circles.

If we ask the same question of historians of health, they would emphasise that few epidemic diseases have been eliminated. They would also remind us that past epidemics were both biological and social, and that these companion epidemics do not necessarily have identical endpoints.

Pandemics are human rights problems
Advocates of a human rights-based approach to health, and to science, know this all too well. The HIV/AIDS pandemic is one very good example: mostly the world moved on when death and other harms subsided in some places—when the pandemic became somebody else’s problem.

In human rights, the HIV/AIDS pandemic is not somebody else’s problem; it is a human rights problem. The same is true of epidemics and pandemics more broadly; none are somebody else’s problem. This isn’t to say that human rights offer a silver bullet, or to say that human rights’ work should be critique-free. But it is both a marker—discrimination and inequality in participation in science and access to the benefits of science are ongoing—and a commitment to finding better ways to bring the relationship between science and human rights to life. This Curated series is one small manifestation of that.

 

 

 

 

 

Cite as: Gomez, Veronica; Murphy, Thérèse. "Introducing Curated #1: Science, Human Rights and Pandemics", GC Human Rights Preparedness, 16 November 2020, https://gchumanrights.org/preparedness/article-on/introducing-curated-1-science-human-rights-and-pandemics.html