Difficult trade-offs in response to COVID-19: the case for open and

Authors: Ole F. Norheim, Joelle M. Abi-Rached, Liam Koﬁ Bright, Kristine Bærøe, Octávio L.M. Ferraz,

Siri Gloppen, Alex Voorhoeve

Difficult trade-offs in response to

COVID-19: the case for open and

inclusive decision-making

Authors

and aliations

Ole F. Norheim

Bergen Centre for Ethics and Priority Setting, Department of Global Public Health and Primary Care, University of Bergen,

Bergen, Norway

Department of Global Health and Population, Harvard T.H. Chan School of Public Health, Boston (MA), USA

Joelle M. Abi-Rached

École Normale Supérieure and Médialab, Sciences Po, Paris, France

Liam Koﬁ Bright

Department of Philosophy, Logic and Scientic Method, London School of Economics, London, United Kingdom

Kristine Bærøe

Bergen Centre for Ethics and Priority Setting, Department of Global Public Health and Primary Care, University of Bergen,

Bergen, Norway

Octávio L.M. Ferraz

Transnational Law Institute, The Dickson Poon School of Law, King’s College London, London, United Kingdom

Siri Gloppen

Centre on Law and Social Transformation, Department of Comparative Politics, University of Bergen, Bergen, Norway

Alex Voorhoeve

Department of Philosophy, Logic and Scientic Method, London School of Economics, London, United Kingdom

Departments of Applied Economics and Philosophy, Erasmus University, Rotterdam, Netherlands

A shorter version of this article is [submitted/in print] as a Comment to Nature Medicine

Corresponding author: Ole F. Norheim. Bergen Centre for Ethics and Priority Setting, Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.

Address: Årstadveien 21, 5020 Bergen, Norway. E-mail: [email protected]

Difficult trade-offs in response to

COVID-19: the case for open and

inclusive decision-making

iii

Contents

Introduction .......................................................................... 1

What is at stake ........................................................................ 2

Participation as a human right ........................................................... 5

Elements of open and inclusive decision-making............................................ 7

The case for fair processes ............................................................ 7

The role of experts ................................................................... 9

Challenges for vulnerable countries ...................................................... 10

Experiences of participatory processes in the context of COVID-19 ........................... 12

Concluding remarks ................................................................... 15

References ........................................................................... 19

Introduction

The COVID-19 pandemic has forced governments

to make dicult choices that profoundly aect

their populations’ health, wealth and liberties. In

order to address the public health and economic

emergencies generated by the pandemic, these

high-stakes decisions have often been made

quickly, with little involvement of stakeholders

in deliberations about which policies to pursue.

Even in emergencies, however, there are important

practical, moral and legal reasons for open, inclusive

decision-making. This improves the quality of

decisions, increases their legitimacy, engenders

Introduction

trust and generates greater conformity with public

health and social measures. Such deliberations

also show respect for people’s ability to offer,

assess and act on reasons and are required by the

principles of human rights and rule of law. When

hard policy choices and trade-os are required

regularly, the processes must be institutionalized,

so that broad-based, transparent decision-making

becomes a routine, central feature of governance.

We characterize such decision-making, argue the

case for it and oer examples of how to put it

intopractice.

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

Despite considerable uncertainty about the health

impacts of SARS-CoV-2, the scientic consensus

is that the burden on health of its uncontrolled

spread would be substantial (1). In the absence of

policies to slow its spread, it is likely that more than

50% of the population of each country would be

infected (2). Estimates of the infection fatality rate

depend on each country’s characteristics, including

demography, but are 0.23–1.15% (3), suggesting

that the direct eect of uncontrolled spread of

COVID-19 would be the deaths of at least 0.1–0.6%

of aected countries’ population, concentrated

among the elderly, and among vulnerable, socio-

economically disadvantaged and marginalized

groups (4–6). Moreover, for many people, non-fatal

infections may result in signicant health eects

(so-called “long COVID”), and the burden of caring

for patients with COVID-19 could overwhelm

health systems.

To limit COVID-19-related morbidity and mortality,

many governments have expanded the capacity

of their health care systems and invested in the

development and provision of treatments and

vaccines. They have also turned to a range of

public health and social measures, including:

public health messaging (such as advice on

how to prevent acquiring and transmitting

SARS-CoV-2), sometimes accompanied

by efforts to counter misinformation and

contrary opinions;

personal protective measures (such as hand-

washing and mask-wearing);

environmental measures (such as cleaning,

use of screens and ventilation);

surveillance and response measures

(including testing, contact-tracing, mandating

isolation of those with the disease, those

exposed and travellers from high-risk areas);

and

What is at stake

physical distancing measures, from requiring

space in workplaces and shops to imposing

limits on all non-essential social contact,

often referred to as “lockdowns”.

In accordance with our brief, we focus on such

measures. Even if new vaccines are approved, full

vaccine coverage will take time, and public health

and social measures will be necessary for the

foreseeable future. Each measure can be applied

to dierent degrees. The stringency of a lockdown

can vary in several dimensions:

severity: the degree and extent of contact

limitation, from a requirement to stay at

home except for work, education or shopping

for essentials to a complete ban on leaving

home;

selectivity: who is subject to the limitations,

from people living in areas with a high

prevalence to the whole country and from

particular social groups, such as older or

extremely vulnerable people, to the entire

population;

start date: the extent of spread of the virus in

a given population at the time the lockdown

is imposed;

duration: how long the restrictions are

imposed;

aim: to control the spread of the virus so

that the prevalence is kept at a level that the

health system can manage, or to suppress it

completely so that it is almost fully eliminated;

and

enforcement: the eectiveness with which

restrictions are enforced, through state power

and social norms.

What is at stake

Such policies have complex effects. Modelling

suggests and country experience demonstrates

that, if these public health and social measures

are deployed effectively and early enough in

the pandemic, they can very eectively limit the

spread of the virus and thereby greatly attenuate

its direct impacts on health (7–10). Many of these

measures, however, also have substantial costs.

Environmental measures to reduce infectiousness

are burdensome. Mandatory isolation is a

substantial limitation on freedom of movement

and association, and contact-tracing infringes on

people’s privacy and generates concern about

concentrating personal data in government

agencies and large technology companies (11).

Lockdowns also severely limit people’s freedom

of movement and association, as well as their

freedom to protest. They also have substantial

short-term economic costs. Countries that imposed

stringent lockdowns had sharper falls in gross

domestic product per capita in the rst half of

2020 compared to pre-pandemic projections, and

the eect persists after correction for the severity

of the pandemic in each country (12). The scale of

economic contraction in countries that have had

stringent lockdowns varies but is substantial: from

about 4% of gross domestic product in Ireland

to 16% in India and more than 20% in Peru (12).

In high-income countries, more than half of the

fall might have been due to the stringency of the

lockdowns (8,9). Moreover, stringent lockdowns

also dissuade people from seeking the health

care and preventive interventions they need and

have exacerbated mental health problems, the

risk of suicide, domestic violence, addiction and

loneliness (13). They have also aected child care,

education and therefore the ability of parents

towork.

People who are socio-economically worse off

or otherwise marginalized have most at stake.

Those who are much poorer than others are at

higher risk of becoming infected because of their

poor working and living conditions (14). They also

disproportionately suer the negative eects of

a lockdown, unless it is accompanied by targeted

economic support. For example, people who rely on

the informal economy (including disproportionate

numbers of poor and marginalized groups,

such as indigenous peoples (15), migrant and

undocumented workers, internally displaced

people and refugees) often live in dire, crowded

conditions, are badly aected by restrictions on

economic activity and movement and often have

less access to social safety nets or health care

(16). For these groups, stringent lockdowns and

the associated economic downturn may impose

severe, possibly life-threatening limitations on

their access to basic necessities (17,18). Other

eects are also concentrated in disadvantaged

groups. When lockdowns limit access to child care,

they aect women’s access to work (12). When they

limit in-person education, they delay learning,

and this appears to be concentrated among the

poorestgroups (19).

The policy space that countries have to address

health and economic crises varies. Well-off

countries with well-functioning governments and

high borrowing capacity have a wider spectrum

of possible policy interventions than less wealthy

countries and countries with diminished State

capacity. Emerging economies and middle-income

countries that depend heavily on exports, foreign

remittances, tourism or capital inows will be the

hardest hit by a global economic downturn and

may nd that their borrowing capacity (and hence

their capacity to oset the economic impact of

lockdowns) is constrained (20). In addition, some

poor and developing countries were already

experiencing crises, including war, economic crisis

and/or a breakdown in governance (21).

All countries therefore face a difficult task in

balancing the uncertain and unequal impacts

of public health and social measures on health,

income, liberty, education and other goods.

In making such decisions, there is reason to

believe that the degree of trust in government

and consensus on public measures substantially

influence which policies are feasible and the

balance of benets and burdens of those policies.

Lockdowns and their public health and social

measures are probably less costly if they are

implemented before the virus has spread widely

(see, e.g. 22). Early action, before the eects of the

virus on health are evident, requires condence

of the population in the state. Willingness to

adhere to policies when there is a lot at stake for

individuals and information about the threat is

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

both uncertain and complex requires trust in those

who make decisions. If there is trust, adherence is

likely to be more widespread, as people will more

often be voluntarily motivated to act in accordance

with the policies. Policies are more effective

when compliance is greater, and, as noted above,

compliance may depend on the extent to which

the public trusts the government’s eectiveness

and its handling of personal data and it has the

assurance that other members of the public are

complying.

Although it is clear that lockdowns have substantial,

identified, immediate economic and social

effects, those saved by lockdowns are less well

identified, and the potential economic benefits

of reduced transmission are far in the future and

less certain. The health gains are also insecure,

unless the lockdown can be sustained until the

virus is adequately suppressed. Lockdown policies

are therefore a “bargain” into which the public can

be expected to enter only if they have sucient

condence that they will be eective.

Public agreement to measures that restrict

people’s liberty crucially determines the severity

of the burdens imposed by those restrictions.

While lockdowns and associated measures limit

freedom, they are imposed for a purpose long

recognized by defenders of individual rights:

the prevention of harm to others, in this case by

preventing transmission of a dangerous virus

(23). Although such restrictions may infringe on

individuals’ rights to free movement, association,

public protest and religious worship, when

deliberation leads to widespread acceptance, there

will be fewer challenges to measures that restrict

liberty. Moreover, restrictions are less invasive of

the autonomy of those who accept them, as they

can still live by principles they accept. Acceptance

will increase voluntary adherence and thus limit

the need for coercive measures. In line with this

reasoning, research suggests that condence in

state institutions is an important factor in reducing

the health burden of COVID-19 (14).

In this article, we argue that transparent, inclusive

decision-making contributes to public condence

and policy adherence. We present the broader

normative case for giving a say to all those whose

health, wealth and liberties are at stake, which, in

a pandemic, is all of a country’s inhabitants.

Participation as a human right

Transparent, inclusive, accountable decision-

making is required by the principles of human

rights and of the rule of law to which most countries

are committed through their participation in

international treaties and the provisions of their

domestic laws, including constitutions. The right

to participate directly and indirectly in political

and public life is recognized for example in the

Universal Declaration of Human Rights (Art. 21)

(24) and the International Covenant on Civil and

Political Rights (Art. 25) (25), which has been ratied

by 173 states:

Article 25: Every citizen shall have the right

and the opportunity, without any of the

distinctions mentioned in article 2 and without

unreasonable restrictions:

(a) To take part in the conduct of public

affairs, directly or through freely chosen

representatives; ….

As the United Nations Human Rights Committee

stated, “Article 25 lies at the core of democratic

government based on the consent of the people

and in conformity with the principles of the

Covenant” (General Comment No. 25, para 1). The

Committee has also made clear (para 8) (26) that

[c]itizens also take part in the conduct of

public affairs by exerting influence through

public debate and dialogue with their

representatives or through their capacity to

organize themselves. This participation is

supported by ensuring freedom of expression,

assembly and association.

In September 2016, the United Nations Human

Rights Council, concerned that many people

continued to face obstacles to the enjoyment

of their right to participate in the public aairs

of their countries, requested the Office of the

High Commissioner of Human Rights to prepare

guidelines for States on eective implementation

of Article 25 (A/HRC/RES/33/22, 6 October 2016).

The guidelines presented 2years later (A/HRC/

RES/39/11, 5 October 2018) are grounded on the

following general principle:

Participation makes decision-making

more informed and sustainable, and public

institutions more effective, accountable

and transparent. This in turn enhances the

legitimacy of States’ decisions and their

ownership by all members of society (27).

Several clarifications and recommendations of

the guidelines are directly relevant to the current

health crisis and the arguments we put forward in

this paper. The guidance emphasizes, for instance,

that Article 25 is not limited to so-called “electoral

rights”, i.e. rights to participate in periodic, free,

fair elections as a voter or a candidate. It also

addresses direct and indirect participation in non-

electoral contexts, covering, broadly, all aspects

of public administration and the formulation and

implementation of policy at international, national,

regional and local levels (para 49). The instruments

for such participation include referenda, popular

assemblies, consultative bodies, public hearings, as

well as free public debate and dialogue (para 50).

Moreover, participation should be enabled at all

stages of decision-making, before, during and after

a decision is made (e.g. agenda-setting, drafting,

decision-making, implementation, monitoring and

reformulation, para 53).

The current health crisis has exposed the insucient,

fragile status of the right to participation across the

globe, including in better-established, democratic

regimes. This is a particular concern in the light of

what is at stake. As discussed above, the arsenal

of measures available to governments to respond

to pandemics includes tools that could infringe on

fundamental rights such as freedom of movement,

freedom of assembly and the right to protest, in

particular when a state of emergency is declared,

which gives the government powers that it does

not have during normal times. In this context, the

Participation as a human right

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

right to participation recognized in Article 25 of

the International Covenant on Civil and Political

Rights becomes even more important, as it enables

an additional layer of popular accountability,

which can enhance the legitimacy of measures

and, by increasing acceptance of the measures,

the eectiveness of countries’ responses to the

health crisis.

Elements of open and inclusive decision-making

While acceptance of policies can improve

adherence, the complexity of the issues makes it

dicult for individuals to reach a comprehensive

conclusion about whether a policy is acceptable.

For this reason, trust in authorities – understood as

“a person’s belief that another person or institution

will act consistently with their expectations of

positive behaviour” (28) – is often necessary for

acceptance. Trust in governing authorities can

result in adherence to directives in the belief

that the authorities are acting in the interests

of the people (29). Trust enables and motivates

cooperation, and thus policies are implemented

with fewer protests. In this sense, trust can forestall

the use of force to ensure compliance.

Trust is not irrational and is not automatic in new

circumstances; it must be earned (30). A major

challenge for authorities is to be and to present

themselves as trustworthy when making dicult

choices in a pandemic. To provide reasons to be

trusted, they should make themselves accountable

to the public. By describing how they manage

evidence and uncertainty and just distribution of

burdens and benets and by ensuring that policies

are decided after dialogue with the people who are

aected and are open to challenge and revision,

members of society are given opportunities to

influence and assess the authorities’ choices.

Authorities thus allow people to place justied,

and not blind, trust in their governance strategies.

The case for fair processes

In order for people to accept burdensome policies

and to adhere to them willingly, the policies must

be perceived as fair. The fairness of a decision

can be assessed substantively, in terms of its

impacts on people’s lives and freedom, and/or

procedurally, in terms of how the decision was

made (31). The assumption behind procedural

Elements of open and inclusive

decision-making

justice is that, even in the face of widespread

disagreement about the just distribution of

burdens and benefits, the affected parties can

sometimes be expected to reach agreement on

the conditions that must be in place to make

decision-making fair (32–34). Procedural fairness

allows people to consider a policy fair even though

they would have preferred another policy or are

unable to reach a conclusion on the substantive

fairness of the policy. This general framework is

broadly supported by political philosophy and

empirical research on procedural fairness (31–37)

and recognized and enforced by human rights

law (see previous section). The key arguments for

transparent, inclusive decision-making are listed

in the box.

From the perspective of political philosophy,

procedural fairness requires that decisions that

affect people’s interests are taken: (a)on the

basis of evidence; (b)with equal consideration

of everyone’s interests and of their legitimate

perspectives; (c)on the basis of reasons that people

can share, that is, recognize as relevant from their

differing views of a good life and substantive

fairness; (d)in an open, accessible manner; and (e)

through institutional means that permit challenge

and revision of decisions. Such procedures

promote inclusion, require openness and make

the decision-makers accountable, all of which

contribute to the perceived legitimacy of and trust

in the decision-makers and to adherence to the

policies (38). Evidence from empirical research on

fairness shows that people’s assessments of the

fairness of a legal decision are also inuenced by

how the decision was made (35). Fair procedures

are the aspect that determines the legitimacy of

authorities and, with that, people’s willingness to

defer to their decisions (36).

This approach might be seen as placing demanding

requirements on the capacity of the participants

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

in the deliberation to reason and to propose

impartial reasons for and against policies. This

could therefore exclude the voices of those who

do not always express their concerns in such terms.

Such “silencing” must be avoided to ensure that a

broad range of perspectives is heard on contested

policies, while at the same time nding ways to

lter out partial suggestions and to give equal

consideration to the expressed interests of all

(39). In particular, people who express aggressive

resistance to policies for reducing exposure to the

virus or lack of fair-mindedness in nding solutions

should be invited to contribute their perspectives

to collective deliberation (39). Their concerns

must be addressed respectfully, and, if it is found

that they cannot be accommodated, the people

involved should be given an accessible justication

of why their views cannot be determinant in the

content of the public health and social measures.

In a pandemic, the equality of concerns is crucial.

Perceived unfairness of exclusion of a person’s

critical perspectives can lead to lack of adherence

and undermine the eectiveness of public health

and social measures.

Seminal socio-legal work on procedural fairness

describes the elements of decision-making and

procedural components and rules that may be

relevant for perceived fairness (40). Some of those

rules are as follows.

Consistency requires that allocative procedures

are uniform among people and over time and

that the distributions of harms and benets are

assessed according to the same standard for all.

Bias suppression requires abstinence from

exclusive promotion of self-interest and giving

up ideological preconceptions. This is important

for how broadly participants are invited and how

their views are listened to and addressed.

Accuracy demands that decisions be based

on the best available evidence and informed

opinion. Of course, robust evidence on any

harmful consequences of proposed policies

may not be available when decisions are made.

Open communication of what is not known thus

becomes essential for accurate presentation of

conclusions (41).

Correctability indicates that it must always

be possible to revise a decision in the light of

emerging reasons. This is particularly important

in an emergency or crisis, when decisions are

based on uncertain, evolving evidence. A policy

might therefore cause unforeseen harm, and new

reasons for adjusting policies might be proposed

by those aected.

Representativeness requires that the concerns,

values and perspectives of all groups in society are

presented. In a pandemic, especially when drastic

measures are necessary, it is essential to include

the voices of the people who would be adversely

aected by a potential policy. Moreover, inclusion

of representatives of subgroups by allowing them

equal opportunities to have a say on decisions

manifests actual power-sharing and democratic

inuence and thus mitigates power imbalances

(42).

We would also add that transparency and

accessibility, including for those who were

not directly involved in a decision, are crucial

for perceived fairness. These attributes broaden

the reach of the process and thus enhance the

eects of the rules on accuracy, correctability and

representativeness.

The relevance of these procedural principles

depends on the circumstances (40). For

policy-making in a pandemic, however, when

extraordinary measures are called for and the

stakes are high, these principles are important to

protect rights and ensure respect. By promoting

respect for everyone’s perspective, the procedures

foster and protect self-esteem and empowerment

in a crisis.

In principle, all members of the public are aected

by policies that will profoundly shape their health

and living conditions and should therefore have

the opportunity to have an input. This ideal is

realized by making all relevant information

publicly accessible for scrutiny and criticism, with

established channels for appeals.

Elements of open and inclusive decision-making

The role of experts

Given the importance of using evidence in fair

process, we look closely into the role of scientic

experts in deciding on public health and social

measures. The involvement of experts is core

to any fair process for public decision-making,

because the public has the right to decisions

that are as well-informed as possible. Ideally,

research facilitates policy-making by providing

well-confirmed models or generalizations that

indicate the possible consequences of dierent

scenarios that are relevant to local decision-

makers(43,44). Trustworthy decision-making thus

involves experts and builds on the evidence they

provide as far as possible. It is, however, dicult to

ensure that the manner in which experts interact

with the public is consistent with the democratic

and participatory principles that this report seeks

to advance (45), and the principles that should

guide such interactions should be formulated.

Generally, we agree with and generalize the claim

by Gurdasani et al. (46) that

governments […] ought to conduct regular

briefing and be open, honest, and transparent

about where we are. [They] must admit to

and learn from mistakes, not overstate [their]

capabilities and achievements, and must

treat the public as equal partners, working

with communities to develop effective health

promotion strategies.

For achievement of this ideal, we highlight three

high-level principles to guide governments and

expert bodies. Experts should communicate in a

way that is (i) transparent with regard to empirical

uncertainties, (ii) transparent with regard to values

and (iii) receptive to public feedback.

It is inevitable that action must sometimes be

taken before scientic enquiry allows anything

like certainty (47). This is true especially in this

pandemic, with uncertainty about the values

of key parameters, about relevant causal

mechanisms and about how people will respond

to novel events. In order to reason about these

uncertainties sensibly, the public should be made

aware of where the uncertainties arise and how

they may be dealt with (48). The way in which

uncertainties are represented can make a huge

difference to what kinds of decisions can be

supported rationally (49–51). Further, the public is

highly sensitive to expressions of disagreement or

uncertainty by scientists (52,53). If people are not

appropriately informed about what uncertainties

mean, they will be open to manipulation by well-

resourced groups acting in bad faith (52,53). More

generally, in order to combat the “infodemic” of

misinformation spreading on social media, which

is interfering with rational attempts to address

COVID-19, transparent, frank dialogue should be

maintained among scientists, policy-makers and

the broader public (54).

In order to justify a particular approach to addressing

uncertainties, scientists must often appeal to ethical

or political values in deciding which risks are worth

taking more seriously than others (55). Such value-

laden decisions affect not only what scientists

consider to be true but how they communicate

their uncertainties and the measures they used

to weigh and assess the outcomes of interest.

Science communication should hence prioritize

communication of the nature of the value-laden

decisions that scientists must make, including what

the stakes are and how the legitimate interests of

dierent parties are assessed and weighed.

People who communicate science should ensure

that scientists are appropriately receptive to public

feedback, including challenges to their knowledge.

They should therefore themselves understand

that public input into research can be legitimate

and important, and they should be receptive to

bidirectional communication between the public

and scientic experts.

In considering how these principles for science

communication can be put into practice, policy-

makers can draw on a wealth of examples. For

instance, “mini” public exercises have been

conducted in which experts are called as “witnesses”

by deliberative panels of citizens and asked to

explain points such as “What we are uncertain about

and why”, “Whose interests are at stake”, followed

by questioning and scrutiny by representatives of

the public (56). Work is under way to update these

models with respect to COVID-19 (57).

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

Difficulty in meeting the conditions for fair

processes discussed above differs by country.

Some experiences have been positive. Countries

that have managed to mitigate the socioeconomic

impacts of the pandemic include both those with

authoritarian regimes and democracies and both

low- and high-income countries. Many countries

with weak, untrustworthy institutions, scarce

health care resources and budgets, and limited

scal space will be unable or unwilling to meet

all the requirements of fair processes and fair

conditions, some because of structural constraints

(e.g. weak institutions or limited scal capacity)

and others because they are unwilling to engage

with all the parties aected.

A particular set of challenges stems from

inequality. There is preliminary evidence that

countries with greater income inequality tend to

have higher numbers of deaths from COVID-19,

partly because the poorest have high risks of

infection and limited access to treatment and

partly because high inequality reduces trust in

government institutions (14). South Africa, which

is the country with the most inequality in the

world, has the highest mortality rate on the African

continent and twice the world average number of

deaths per million. Brazil, the Russian Federation

and the USA, where there are wide gaps between

the rich and the poor, have also experienced high

number of deaths from the virus. A deadly surge

of cases is being experienced in Lebanon (21,58),

the most unequal country in the Arab world

(Gini index 50.7), and its population is facing a

concatenation of crises – socioeconomic, banking,

nancial, political, humanitarian, environmental

and sanitary – with more than half of its population

now poor. Other challenges face Latin America,

which has some of the highest rates of mortality

due to COVID-19. Peru is among the hardest hit

countries (59). While the Peruvian Government’s

initial response appeared to be exemplary (a

Challenges for vulnerable

countries

swift, strict lockdown and a generous economic

package), the pandemic exposed the fragility of

an emerging state with weak and untrustworthy

institutions, a weak, deeply unequal health care

system, a high level of corruption and a large

informal sector. Hence, generally, the more equal

(albeit poor) a society is, the more likely are fair

processes; conversely, the more unequal a society

is, the more challenging it will be to meet the

conditions of fair process.

Lack of trust in governments and institutions in

these contexts is a major obstacle to compliance

with public health and social measures (28) and

also to nding common ground among all aected

parties. Nonetheless, these countries could improve

decision-making processes under COVID-19. At

a minimum, civil society and nongovernmental

organizations could mobilize and join eorts to

make sure that their governments:

intervene early in a cooperative, transparent

manner that includes all private and

public stakeholders and especially local

communities;

communicate clearly, frequently and

consistently with the public both online

and through traditional channels of

communication. Because of widespread

mistrust in ocial sources, authorities could

enlist the help of civil society organizations,

village councils and religious and traditional

leaders to disseminate information and

engage with communities in finding

workable strategies (18);

make health-related data openly available,

and consult experts as widely as possible in

an open, transparent way, both for countering

disinformation and to help all aected parties

in making evidence-based decisions;

Challenges for vulnerable countries

ensure that grants and funds received from

international organizations are well spent

and allocated to social and health sectors. The

International Monetary Fund has approved

debt service relief via grants to the 29 poorest

countries and has provided lines of credit

(US$ 100 billion) to 81 countries (60–62).

While this support is vital, the decisions

were taken in an unprecedented expeditious

manner, with few checks and balances to

ensure compliance with the terms of the

loans and the commitments of countries to

reallocate the funds appropriately to crisis

mitigation. The Fund has stated its intent to

monitor emergency lending, but it has yet

to publish or share the detailed mechanism

for each country that has voiced its “intent”

to reallocate funds to COVID-19 (63). Given

the signicant increase in lending to poor

countries, the organizations involved do

not have the capacity to monitor the

conditions of their loans as carefully as in

the past. Moreover, as called for in the Paris

Declaration on Aid Eectiveness (2005) and

the Accra Declaration for Action (2008), the

participation of local nongovernmental

and civil society organizations is essential

in pressuring governments to spend the

funds appropriately, hence enhancing their

eectiveness (64); and

try to regain public trust and condence by

ensuring open, inclusive, and transparent

decision-making. While it is true that in

Kerala, a poor but equal Indian state, trust

in local authorities was a prerequisite for

the implementation of pro-active public

health and social measures, the transparent,

comprehensive strategy that was successfully

implemented also helped reinforce that pre-

existing public trust to the extent that state

actions were complemented by voluntary

actions by the people: wealthy families

donated their homes for quarantine and

isolation, village councils monitored cases

locally, and students volunteered to set up

COVID-test kiosks in their neighbourhoods (65).

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

After decades of lobbying by patient groups and

civil society organizations, a growing number of

countries have institutionalized systems for more

open, inclusive decision-making, including for

health. In many countries, this has been developed

within the Open Government Partnership (66). With

few exceptions, however, these systems have been

side-lined during the COVID-19 pandemic, leading

to poorer decisions and preventable deaths (67,68).

Notable exceptions are the Republic of Korea

and Taiwan (China), where inclusive decision-

making has been seen as central to their successful

responses to the pandemic.

Several countries with a history of inclusive

health governance and systems appear to have

benetted from those systems to some extent in

the early stages of the pandemic, although they

were not used to their full capacity. Successful

COVID-19 responses have been ascribed partly

to a reservoir of trust in the public health system

and in authorities and to eective communication

strategies and social support mechanisms that

ensured compliance. These have been linked to

previous practices of stakeholder participation and

health democracy and to unied, robust public

health systems. As the strains of the pandemic

increase, trust is wearing thin in most countries,

and decision-making systems must urgently be

revitalized and made inclusive.

Experimentation with inclusive, deliberative

decision-making provides useful guidance on

making the process more inclusive, transparent

and accountable in the context of the COVID-19

pandemic (68,70). Many participatory mechanisms

have been introduced throughout the world in

recent years to improve the quality and legitimacy

of public decision-making, including in health. A

catalogue, including initiatives taken in relation

to COVID-19, can be found at https://participedia.

Experiences of participatory

processes in the context of

COVID-19

net/. Studies have shown that when such initiatives

were carefully set up and implemented, they were

useful and robust, indicating that they could be

promising for the type of decision-making required

in response to COVID-19, involving value-based

questions and complex trade-os (71).

As discussed above, four groups of actors must

be included in decisions: scientists and experts

in relevant elds; stakeholders who can express

the concerns of aected groups (such as patient

associations, trade unions, cooperatives and

student organizations); members of the public

more broadly and especially members of groups

that are likely to be missed by stakeholder

associations; and the politicians responsible for

making the decisions.

Some deliberative processes, such as certain large

assemblies of citizens, can and have included all

four types of actor; however, most participatory

mechanisms centre on one or two groups. For

complex decisions that must be taken quickly and

revised regularly, complementary processes and

mechanisms may have to be coordinated. From

a pragmatic point of view, it is thus important to

identify the existing participatory mechanisms

that contribute to COVID-19-related decision-

making and to consider how they can best be

integrated, not least in ensuring that public and

stakeholder deliberations are informed by and

inform scientic expertise. The elements that can

and increasingly do form part of such systems

include the following.

(i) Inclusive deliberative bodies set up to include

relevant voices and provide well-considered

advice, “mini-publics”, may consist only of

randomly selected members of the public or also

include experts, stakeholders and/or politicians.

Even when they are not members, experts and

Experiences of participatory processes in the context of COVID-19

organized stakeholders are usually brought

in to provide evidence and answer questions.

Some of these deliberative forums are large,

ad-hoc citizens’ assemblies, while others are

permanent public panels set up to address new

issues as they arise, and others are advisory

councils with expertise in a particular area.

Such bodies, when properly constituted, can

be particularly useful for reaching trustworthy,

legitimate decisions on dicult ethical questions

and complex trade-os.A great advantage of

these bodies, besides the deliberative process,

which allows views to be shaped and reshaped

in the light of evidence and arguments, is that

they are often broadly representative of the

population and ensure inclusion of particularly

affected groups. Deliberative forums have

always been held face-to-face, over several days,

but are increasingly conducted online, often at

shorter intervals. While certain groups may face

practical challenges of technical access, online

communication is relatively easy to facilitate for

limited, selected bodies. Examples of deliberative

bodies that have been set up and used in the

context of the pandemic include: the COVID-19

Culturally and Linguistically Diverse Community

Forums (72) and a Deliberative Consultation on

Trade-os Related to Using “COVIDSafe” Contact

Tracing Technology (73) in Australia, the Oregon

Citizens’ Assembly on COVID-19 recovery in

the USA (74) and planning recovery in the West

Midlands by a citizens’ panel in England (75).

The last is a good example of coordination

among different mechanisms. It was formed

to represent a cross-section of the public by

the West Midlands Recovery Co-ordination

Group (which itself is a collaboration among

local authorities, emergency services and local

enterprise partnerships) to complement the

Economic Impact Group, which consists of

business leaders, central Government, banks,

trade unions and local authorities.

(ii) Hearings are institutionalized in many countries

to gain insights from experts and stakeholders

on draft legislation and policy. Their advantages,

particularly when they are mandated in laws

and regulations, are that they are closely linked

to formal decision-making and can inform and

spur public debate and confer legitimacy on

decisions for interested stakeholders. Most

importantly, they can increase the knowledge

base and enhance the quality of deliberations by

governments and legislatures by broadening the

points of view and interests considered. Hearings

do not, however, have an inclusive, deliberated

output, as the participants in hearings do not

jointly deliberate difficult ethical issues or

trade-os. As submissions are usually public,

participants often engage with the considered

views of adversaries. Most institutionalized

hearings are not open to the general public.

Mandated consultations with indigenous

peoples, set up to protect their autonomy

and rights, could be extended to COVID-19-

related decisions, as indigenous groups are

particularly vulnerable (76–78). Hearings related

to the pandemic have been conducted in

Norway on the “Corona-law” and changes in

the regulation; however, although mandated in

law, it was enacted only after lobbying by civil

society groups, academics and the National

Human Rights Institution (79). In the USA, where

hearings are optional, the National Academies

of Sciences Engineering and Medicine provided

opportunities for public comment on a draft of a

Preliminary Framework for Equitable Allocation

of COVID-19 Vaccine (80).

Most of the public participation and inclusive

decision-making initiatives that have emerged in

the pandemic, belong, however to the third type

of element.

(iii) Open, self-selective public participation

mechanisms. Such mechanisms are set up by

national or subnational governments or by civil

society to ensure that, in principle, everyone

can make their voice heard. They take a variety

of forms, including deliberative “town halls”

and village or municipal meetings, which may

be face-to-face or, increasingly, online in the

form of “virtual democracy platforms”, radio and

television call-in shows, calls for petitions and

crowd-sourcing of legal provisions, guidelines

and policies through “Wikipedia-style” drafting

and editing. Mechanisms are often set up to

collect the participatory input and make it

available to decision-makers, and eorts are

made to determine how the input is taken

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

into account in decision-making. A common

criticism of these mechanisms is that they are

used de facto more often by those with the

most resources and do not usually ensure that

the views of the most vulnerable are enabled

or represented (69,81). Online platforms are

crucial in facilitating such mechanisms, not least

during the pandemic, but, unlike organized

“mini-publics”, for which variable access to the

Internet and technology can be compensated,

access is a greater barrier to open participation.

Mechanisms for public engagement related to

COVID are many and diverse (for more examples,

see https://participedia.net/collection/6501).

In Scotland, a national crowd-sourcing exercise

was undertaken to create a framework for

decision-making in the context of COVID-19, in

which the Government “sought public input on

the on approaches and principles that would

guide decision making related to transitioning

out of the coronavirus (COVID-19) lockdown

arrangements” (82). In Brazil, the federal health

system has set up an extensive mechanism

for transparency and public engagement in

COVID-19 (83); Senegal has established several

citizen initiatives (84,85); and civil society

in Lebanon has set up the Independent

Committee for the Elimination of COVID-19 (86).

In the United Kingdom, the Government expert

body, SAGE (87), has a civil society counterpart

in Independent SAGE (88). In the USA,

deliberative town halls on COVID-19 are set up

by Connecting to Congress (89), and academics

oer an ambitious transnational resource for

public engagement, Endcoronavirus.org (90).

A participatory system of government for

answering complex questions will usually consist

of a combination of mechanisms to involve

different groups for different purposes. To

serve their purpose and build public trust, they

should be institutionalized rather than ad hoc,

thus making inclusive, transparent, accountable

decision-making a routine feature of governance,

beyond the pandemic, as part of eorts to build

back better.

Concluding remarks

Deliberative decision-making that is inclusive,

transparent and accountable gives everyone a

say in decisions that may profoundly aect them.

It respects people’s ability to offer, assess and

act on reasons and is required by the principles

of human rights and the rule of law. Crucially,

evidence even before COVID-19 showed that

this kind of decision-making can contribute to

more trustworthy, more legitimate decisions on

Concluding remarks

dicult ethical questions and challenging trade-

os. Institutionalising and broadening deliberative

processes should therefore be a priority in the

pandemic response. In the short term, it can build

legitimacy and support for the dicult decisions

that must be made in response to the pandemic

and prevent further erosion of trust. In the long

term, it can contribute to virtuous cycles of trust-

building and more eective policies.

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

Box. Open, inclusive decision-making under COVID-19

A. SUPPORTING REASONS

Political equality and human rights

• Inclusive decision-making ensures that governments act according to the rights of political participation enshrined in national

and international law, in particular human rights law and the principles of accountable government.

• Broad-based, transparent decision-making fulls the ideal of procedural fairness, which requires that decisions that aect

peoples’ interests be taken: on the basis of evidence; with equal consideration of everyone’s interests and perspectives; on the

basis of reasons that people can share; in an open, accessible manner; and through institutional means that permit challenge

and revision of decisions.

• Inclusive decision-making rests on the democratic ideal that all people should have a fair opportunity to participate in decisions

that aect them.

• Inclusion of all those aected promotes self-esteem and mutual respect.

• Transparency allows the public to form informed opinions.

• When decisions are based on reasons that can be appreciated by all, such as the importance of protecting health and limiting

economic impact, all participants are considered capable of understanding and acting on those common reasons.

• Procedurally fair decision-making processes contribute to trust in decision-makers and to the legitimacy of the decisions.

• Inclusive decision-making may lessen social disagreement, because, even in the face of polarized opinions about what to do, it

may nonetheless be possible to achieve agreement on fair procedures for arriving at policy decisions. Policies resulting from fair

procedures may then be accepted even by those who disagree with them on substantive grounds.

• Restrictions on freedom are more readily accepted if they are the outcome of a fair process. Acceptance reduces the burden of

restrictions and renders them more consistent with autonomy.

Eective communication

• Policy decisions are better targeted and more eective if they are informed by accurate descriptions of the circumstances and

evidence of what works.

• Critical scrutiny of evidence and uncertainty can improve decisions.

• Communication of clear rationales and uncertainty engenders trust.

• Transparent, publicly accessible evidence prevents disinformation and builds trust.

Trust and adherence

• Open, inclusive decision-making builds trust. This improves adherence to policies, making them more eective. Greater

eectiveness, in turn, engenders more trust in policy-makers. Open decision-making can therefore contribute to a virtuous

cycle of increasing trust, adherence and policy eectiveness.

Concluding remarks

Box. Open, inclusive decision-making under COVID-19 (continued)

B. KEY ELEMENTS

Political leaders

• Decision-making is built on evidence.

• The ethical, legal, scientic, economic, social and political reasons for a decision are transparent.

• In order to facilitate consensus, as far as possible, the reasons can be shared by people with dissimilar moral and political

outlooks.

• Decisions and their rationale are communicated in a manner that everyone can understand.

Experts

• Experts are drawn from a variety of elds, including the humanities and medical and social sciences.

• Experts communicate transparently about what works and for whom and about uncertainty and values.

• Experts publish their ndings and recommendations for critical scrutiny.

• Epidemiological, statistical and other relevant national data are open to access.

• Experts participate in forums that leave them open to critical feedback and adjust those elements of their practice that are

legitimately challenged by members of the public.

The public

• All aected parties are included, listened to and have a say.

• Special attention is given to vulnerable and marginalized groups and to the perceived harm and benets to people who cannot

easily raise their voices.

Accountability

• All aected individuals and groups can challenge decisions.

• Mechanisms are in place for feedback and revision when new challenges or evidence emerge.

• The input of aected parties is documented.

• Mechanisms are in place for budgetary transparency and ensuring that loans and grants are allocated appropriately.

Dicult trade-os in response to COVID-19: the case for open and inclusive decision-making

Box. Open, inclusive decision-making under COVID-19 (continued)

C. PRACTICAL EXAMPLES

Countries with established systems of participatory health governance, even when they are not used, benet from a base of public

trust, which, with eective communication strategies and unied public health systems are central to a successful COVID-19

response. Examples include: Mongolia (91,92), New Zealand (93,94) and Rwanda (95).

Elements of systems for open and inclusive decision-making include:

Inclusive deliberative bodies: ad-hoc citizens’ assemblies, permanent citizens’ panels, advisory councils

• Australia: COVID-19 Culturally and Linguistically Diverse Community Forums: South Australia (72)

• England: Citizens’ Panel Planning the West Midlands’ Recovery (75)

• USA: Oregon Citizens’ Assembly on COVID-19 Recovery (74)

Hearings: mandated in law or optional

• France: Commission d’enquête pour l’évaluation des politiques publiques face aux grandes pandémies à la lumière de la crise

sanitaire de la COVID-19 et de sa gestion (96)

• Norway: Corona-law and regulation changes (79)

• USA: National Academies of Sciences Engineering and Medicine. Public Comment Opportunities: Discussion Draft of the

Preliminary Framework for Equitable Allocation of COVID-19 Vaccine (80)

Open, self-selective public participation mechanisms: town halls, village meetings (face-to-face or online), radio and

television call-in programmes, petitions and crowd–sourcing, initiated by either government or civil society

• Brazil: mechanism for transparency and public engagement on COVID-19 in the federal health system (83)

• France: Citizens’ committee in Grenoble (97)

• Lebanon: Independent Committee for the Elimination of COVID-19 (86)

• Scotland: Coronavirus (COVID-19): framework for decision-making, national crowd-sourcing exercise (82)

• Senegal: several citizens’ initiatives (84,85)

• United Kingdom: Independent SAGE (88)

• USA: Connecting to Congress, deliberative town halls on COVID-19 (89) and Endcoronavirus.org (90)

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