2. Health misinformation before COVID-19

When the Oxford Dictionary elected ‘post-truth’ as word of the year, in 2016, it meant to reflect on 12 months of growing distrust by the public of any information provided by the establishment, including politicians, mainstream media and big corporations, ushered by the American election and Brexit (BBC News, 2016).

Similarly, the Collins English Dictionary, in 2017, chose as word of the year the term ‘fake news’ (BBC News, 2017), a term that has by now lost its original meaning as a proxy to false information, and became instead a label to discredit any politically uncomfortable or inconvenient news.

Mentioning these two anecdotes has the sole purpose of establishing the point in time where misinformation – an old phenomenon by any account (Mansky, Reference Mansky2018) – became a mainstream concern.

We believe, as others have pointed out, that ‘fake news’, as a term, should be retired from scientific discourse, due to its now latent ambiguity (Sullivan, Reference Sullivan2017). In fact, ‘fake news’ has been by now widely adopted in public discourse to refer to any news that casts a negative light on a subject. Any news item has become easily dismissible by labelling it ‘fake news’, regardless of the accuracy or truthfulness of the reporting.

In this paper, the term ‘disinformation’ and ‘misinformation’ (stricto sensu) will be used to refer, respectively, to incorrect and false information spread with, or without, a deceitful intention. As ‘intention’ is, in most cases, hard to ascertain, ‘misinformation’ (lato sensu) will be the preferred term to refer to the larger phenomenon of spreading false information, regardless of intention.

However, the term ‘fake news’ retains its usefulness for certain purposes. For example, ‘fake news’ can be used as a proxy to ascertain mainstream interest or attention on the larger topic of misinformation. In fact, and confirming the anecdotal evidence introduced by the abovementioned ‘word of the year’ awards, an analysis of the popularity of the term ‘fake news’ on Google Trends – a tool developed by Google that enables users to search and compare the popularity of a certain ‘search query’ in a certain period (Google Support, 2020) – confirms that the period covering the end of 2016 and the beginning of 2017 is when the term became consistently more popular.

Figure 1 is taken from a Google Trends search for the term ‘fake news’, across all categories, worldwide, from 2004 (the earliest possible date) to the most recent date (March 2021).

Figure 1.

Google Trends search for the term ‘fake news’, across all categories, worldwide, from 2004 (the earliest possible date) to the most recent date.

The numbers in the y axis represent, on a scale from 0 to 100, the search interest relative to the highest point on the chart for the selected region and time. A value of 100 is the peak popularity of the term.

As per this graph, and despite the sudden increase in relative popularity of the term during and right after the Brexit Referendum and the 2016 US Presidential Election, its peak popularity came at a later date.

That date was March 2020, the month when the WHO declared COVID-19 a pandemic (BBC News, 2020), and the whole world finally acknowledged that a global life-changing event was taking place.

Before that date, research around online health misinformation was largely focused on health-related conspiracy theories, such as those promoting vaccine hesitancy, deemed by the WHO as one of the top 10 threats to global health in 2019 (Wang et al., Reference Wang, McKee, Torbica and Stuckler2019).

There was some general research around health misinformation signalling what was already a problem with sizable dimensions, albeit less visible. A study found that 40% of the health-related stories published between 2012 and 2017 in Poland contained falsehoods (Waszak et al., Reference Waszak, Kasprzycka-Waszak and Kubanek2018). Misinformation extended to a wide range of topics, from the effects on health of alcohol consumption, smoking tobacco and marijuana, eating habits, obesity and physical exercise.

One of the most visible faces of health misinformation before COVID-19 was vaccine hesitancy, which had already been signalled by the WHO as one of the main threats to global health (World Health Organisation, 2019). An article published in The Lancet in 1998 by Wakefield et al. (Reference Wakefield, Murch, Anthony, Linnell, Casson, Malik, Berelowitz, Dhillon, Thomson and Harvey1998), claiming a connection existed between the measles, mumps and rubella vaccine and autism in young children, sparked what came to be known as the anti-vaccination movement. Even though the paper was later discredited by the UK General Medical Council's Fitness to Practise Panel on 28 January 2010, and subsequently retracted by The Lancet shortly after, media reported extensively on the topic following publication of the first report, and continued to do so even after the emergence of new studies discrediting the initial one (BBC News, 1998; Fraser, Reference Fraser2001).

The endorsement of anti-vaccination sentiment by celebrities may have further contributed to the increasing popularity of the idea that vaccines were dangerous (Martinez-Berman et al., Reference Martinez-Berman, McCutcheon and Huynh2020) and a conspiracy was afoot to vaccinate the world's population for evil purposes.

Other more recent epidemics, such as Zika (Carey et al., Reference Carey, Chi, Flynn, Nyhan and Zeitzoff2020) and Ebola (Vinck et al., Reference Vinck, Pham, Bindu, Bedford and Nilles2019), also elicited research around the impact of online health misinformation. Epidemics are fertile ground for misinformation as they tend to generate an abundance of information, produced fast based on real-time events, without the benefit of time. Populations are usually highly invested in the topic, due to its sensitivity and urgency, and are more prone to believe and share false content (Salvi et al., Reference Salvi, Iannello, Cancer, McClay, Rago, Dunsmoor and Antonietti2021).

Notwithstanding, widespread health misinformation with large-scale consequences is a recent phenomenon, which explained the lack of specific initiatives designed to tackle it. The COVID-19 infodemic changed that.

3. The COVID-19 infodemic

As articulated above, COVID-19 signified an important shift in legal debate surrounding both disinformation and misinformation. The ability for false and misleading information online to undermine public health and hamper state responses has exacerbated anxieties surrounding the veracity of digital information. Since the outbreak, disinformation and misinformation have proliferated online. Dubious stories about military ‘lockdowns’ and falsities surrounding bogus potential cures have amplified socio-legal anxieties surrounding digital platforms. This led the WHO to classify the deluge of rapidly spread falsehoods as an ‘infodemic’ (World Health Organisation, 2020). During the height of the pandemic, EU institutions such as the European Commission cautioned that ‘disinformation in the health space’ is now ‘thriving’, and urged citizens to avoid spreading ‘unverified’ claims online (European Commission, 2020a, 2020b).

The COVID-19 infodemic has spurred new challenges in the global fight against disinformation and misinformation, particularly from a public health perspective. False health narratives and their amplification online can ‘engender ill-informed, dangerous public decisions’ (Nguyen and Catalan, Reference Nguyen and Catalan2020). While pre-eminent sources of health misinformation during the pandemic raise novel challenges, the techniques used to spread falsehoods predate COVID-19. Malicious actors who target voters with predatory disinformation campaigns leveraged similar techniques to stifle responses to the pandemic. In this connection, there is a crossover between health misinformation in the pandemic and broader campaigns to influence elections that have attracted scrutiny in recent years. Vaccine disinformation feeds on pre-existing ‘QAnon’ conspiracies (Santos Rutschman, Reference Santos Rutschman2020). This acceleration of misinformation during the pandemic has led to a resurfacing and intensified scrutiny surrounding the legislative responses to disinformation from European institutions (Vériter et al., Reference Vériter, Bjola and Koops2020). The current environment has also raised fresh concerns surrounding the liability of technological intermediaries for misinformation. As highlighted, not all harmful content is unlawful, and this is a quagmire that is directly linked to the novel challenges surrounding contemporary disinformation. This is discussed below. Notwithstanding the new challenges that arose during the infodemic, it must be pointed out that the prevailing conspiracies surrounding the origins of COVID-19, and misinformation surrounding vaccines, ultimately reflect a new variant of an existing problem. In the EU, the European Commission has initiated a legislative agenda since 2018. In light of the evolving nature of health misinformation in the midst of the pandemic, it is both timely and necessary to examine the novel aspects of health misinformation, and how the current legal framework for disinformation is fit for purpose to meet this evolving challenge.

4. Right to health and freedom of speech

When considering how legislation can be used to insulate the public from health misinformation, the relevant legal safeguards to freedom of expression must be acknowledged and dissected (Noorlander, Reference Noorlander2020). As outlined above, existing efforts to curtail false information online have been carried out through a self-regulatory model, and this has resulted in measures adopted by digital platforms that have been arbitrary and haphazard (Noorlander, Reference Noorlander2020). As a consequence, there is growing pressure on governments and EU institutions to develop and enforce binding legal rules in this area (Radu, Reference Radu2020). In light of this pressure, it is critical to understand how legislation in this area must navigate the protective legal contours of freedom of expression. As outlined above, concerns surrounding how misinformation legislation could cause a chilling effect on freedom of expression are particularly important to address because this type of harmful and misleading content is often not unlawful under EU or domestic laws.

European standards surrounding freedom of expression – and legitimate limitations to this right – must be derived from the framework of Article 10 of the European Convention on Human Rights (ECHR) and associated case law of the European Court of Human Rights (ECtHR). This framework not only informs national laws that affect the responsibilities of technological intermediaries but also influences EU fundamental rights protections through the EU Charter. This is an instrument that is used to inform the above-mentioned Code of Practice on Disinformation and the DSA.

It should be pointed out that under Article 10, there is no general obligation for speech to be truthful, nor is there any specific requirement that information and ideas must be imparted in an accurate and factual manner (McGonagle, Reference McGonagle2017). It must also be highlighted that the ECHR is an instrument that is addressed to states and not directly to technological intermediaries. However, ECHR standards surrounding freedom of expression under Article 10 are crucial as a tool that can be used to inform national legislation in Europe that may impose responsibilities on platforms to remove – or otherwise obscure access to – health misinformation. Moreover, Article 10 of the ECHR is a protection that not only applies to national laws in all EU Member States but also informs EU disinformation policy surrounding intermediaries. Freedom of expression is not an unlimited right under the ECtHR. Article 10 explicitly lays out scope for limitations within its first and second paragraphs. Importantly, Article 10(2) lays out criteria for when freedom of expression can be limited in line with numerous legitimate aims. One of the aims under this limitation clause is the ‘protection of health or morals’. In the ECtHR, the protection of public health has been assessed by the Court as a justification for limiting freedom of expression. Through this aspect of the Court's commentary, important lessons on the scope for limiting freedom of expression on public health grounds can be extracted.

Threaded throughout the ECtHR's commentary on Article 10 is the principle that citizens must have access to information and ideas that are in the ‘public interest’. This principle stems from the Court's early jurisprudence. In Sunday Times vs. The United Kingdom, the Court found an Article 10 violation for the first time. The applicant was a newspaper and had published articles that documented the birth defects associated with the prescription drug thalidomide, and actions that were being litigated at the time by the families of affected children. At the time that the reporting was occurring, the manufacturers of the drug had entirely withdrawn thalidomide from the British market. The topic had also been the subject of extensive parliamentary debate in Britain at the time. In 1972, the Divisional Court of the Queen's Bench granted the injunction on the grounds that publications of an incoming future article on the matter could amount to contempt of court. The ECtHR found that the granting of an injunction against the newspaper could not be regarded as having been an interference that was ‘necessary in a democratic society’. Crucially, the Court held that the public interest of open debate on the subject of the thalidomide drug outweighed the purported justification for the UK's interference with freedom of expression. A similar reasoning was applied in the more recent case of Open Door and Well Woman vs Ireland. Here, the ECtHR found a violation of freedom of expression under Article 10 when the Supreme Court issued two injunctions against advocacy groups. Injunctions had been issued to prevent Open Door Counselling Ltd and the Dublin Well Woman Centre from providing women with information related to the provision of abortion services. In spite of the fact that abortion had been unlawful in Ireland at the time, the information did not attempt to procure any abortion services procured in Ireland, and instead focused on abortion services legally obtainable in other jurisdictions. The ECtHR disagreed with the Supreme Court's decision to uphold the injunctions, arguing that the restrictions were disproportionate to the aims sought, and constituted an unjustifiable impediment on the receipt of impartial and accurate health information.

While in the above decisions the ECtHR reasoned that citizens should have unrestricted access to information relevant to public health, the Court has also reasoned that freedom of expression can be limited by states on the grounds of protecting public health. In particular, the Strasbourg Court has explicitly rejected the idea that freedom of expression encompasses a right to disseminate false and misleading information that is veiled as legitimate medical and scientific information. In the admissibility decision of Vérités santé pratique Sarl vs France, the applicant was a company that published a health magazine. The magazine adopted a ‘critical approach to health matters’ and informed its readership on ‘alternative types of treatment’. The applicant had been denied renewal of its registration with the Joint Committee on Press Publications and Press Agencies (CPPAP). The refusal was based on the grounds that unverified medical information had been published in the magazine. Specifically, the magazine ‘discredited the conventional treatment given to patients with serious illnesses such as cancer or hypertension’. The ECtHR found the application manifestly ill founded. Crucially, the Court reiterated that freedom of expression does not encompass ‘unlimited freedom of expression’ and that public health grounds can be used to justify certain restrictions, provided that restrictions satisfy the longstanding and robust requirements that the ECtHR has fleshed out in its rich Article 10 jurisprudence. That is, interference must be legally prescribed, in pursuit of a legitimate aim, and circumscribed in a manner that is necessary in a democratic society. Importantly, the Court has recognised that the legitimate aims under Article 10(2) can apply in contexts where online platforms may be held liable for identifiably harmful content. For example, in the Grand Chamber decision of Delfi AS vs Estonia, the ECtHR not only accepted that a commercially operated online news portal could be held liable for user comments that harmed ‘the reputation and rights of others’ but also opined that harmful content posted online could cause more lasting damage. Thus, while the application of Article 10 and limitations to freedom of expression primarily affects public authorities, this right also has an important application to private entities that mediate public discourse and play a role in facilitating or restricting access to potentially harmful content.

The Court views domestic restrictions in line with the margin of appreciation doctrine. This means that states have a level of discretion on regulating communications, depending on the nature of the communications. Importantly, the Court has addressed this in the context of dubious public health communications. In the Grand Chamber decision of Mouvement Raëlien Suisse vs Switzerland, the Court accepted that restrictions imposed by Swiss authorities preventing the applicant company from continuing a billboard campaign had been justified and proportionate. The campaign involved the promotion of human cloning, sensual meditation and geniocracy. The Grand Chamber upheld the restriction on the billboard campaign, noting that it could be considered ‘commercial speech’ rather than a genuine contribution to debate in the public interest. In Palusinski vs Poland, the Court rejected the admissibility of an Article 10 application where the applicant had been convicted for publishing a book that enticed readers to consume certain narcotics. The Court, in finding that the Polish authorities had not been disproportionate in the penalty applied, and in finding that the book in question has effectively endorsed the use of certain narcotics, rejected the applicant's argument that a violation of freedom of expression had occurred.

As evidenced in these decisions, the ECtHR has explicitly accepted that freedom of expression can be limited, and that the protection of public health can be considered a legitimate aim for domestic authorities to limit freedom of expression. Importantly however, it is imperative that any restrictions imposed as prescribed by law are based on a legitimate aim, and are necessary in a democratic society. Legislation to curb health misinformation, including vaccine misinformation, must be justifiable and proportionately executed. If these important requirements are not satisfied, it is highly likely that regulatory efforts to flatten the curve of health misinformation will run contrary to freedom of expression.

5. The ethics of health misinformation regulation

The regulation of health misinformation has a complicated ethical dimension. There are two competing interests – to ensure that individuals are not influenced to make decisions that are not in their best interests and which they might not otherwise have made, and to ensure that information can be shared without the threat of it being censored merely because some find it undesirable or unpalatable. It is very important to consider how these interests should be balanced as a matter of law, but it is just as important to consider how they are balanced as a matter of ethics. Whether a regulatory objective can be achieved is distinct from whether it should be achieved. As the analysis above made clear, human rights law generally supports the choice of governments to control the sharing of information in order to protect public health, yet some lawful public health regulations might still impose burdens that are ethically unacceptable in an enlightened democratic society.

Thus, it is important to examine the ethics of health misinformation regulation, and raise ethical concerns when they are warranted – failure to do so is an abdication of the responsibility borne by all professionals who work in the health field to contribute accurately to public health debates and highlight inadequacies where they might exist (O'Mathúna, Reference O'Mathúna2018; Robinson, Reference Robinson2018; Wu and McCormick, Reference Wu and McCormick2018). Moreover, since misinformation has become a tool in the political struggle to control social reality (Farkas and Schou, Reference Farkas and Schou2018), the question of how to combat the generation and dissemination of health misinformation has become a sensitive one that is imbued with political significance. The choice to regulate health misinformation or not is accompanied by an implicit political declaration, which can have real practical effects upon wider health policy. Thus, the matter of whether these choices are made ethically must be carefully considered, to avoid a wider degradation of the moral foundations of health policy.

Scholars have made persuasive arguments for employing a pragmatist ethical approach to the regulation of misinformation (Stroud, Reference Stroud2019), and we contend that this argument applies equally well to the regulation of health misinformation. This is because preventing the spread of health misinformation is a ‘wicked problem’ (Head, Reference Head2008). It is complex, since there are multiple types and sources of health misinformation. It is ongoing, since health misinformation will persist as long as scientists continue to make advances in public health protection (Dubé et al., Reference Dubé, Vivion and MacDonald2015) and as long as there are vested interests in health policy. It is also resistant to being ‘solved’, not only because people are induced by confirmation bias to seek out evidence that confirms their beliefs when they are told that those beliefs are based on misinformation (Meppelink et al., Reference Meppelink, Smit, Fransen and Diviani2019), but also because media platforms and providers, while willing to work with governments to prevent the worst kinds of misinformation, will contest attempts to restrict their editorial independence (Schweikart, Reference Schweikart2018).

Designing a suitable response to a complex and nuanced problem such as how to regulate health misinformation requires an equally complex and nuanced ethical analysis. A pragmatist ethical approach – in which the key insights from major ethical theories are applied without dogmatically relying on any particular one – is most desirable in this situation. Applying any one ethical theory to the problem cannot be appropriate since the complexity of the issue means that such theories could easily be applied in different manners to reach contradictory conclusions.

From a consequentialist perspective, one could argue that regulating the provision of health information to the public may end up depriving the public of knowledge that is helpful in addition to removing information that is unhelpful, and that negative psychological, health and democratic outcomes may outweigh any benefits of regulation (Grill and Hansson, Reference Grill and Hansson2005). However, the fact that discussion of an issue might lead to negative consequences should not be a reason to avoid that discussion – for every instance of mistrust and stifling of democratic debate that could be raised, there is an opposing democratic gain to be made in raising awareness of issues that might otherwise have been hidden from public view (Brown, Reference Brown2019).

From a deontological perspective, it could be argued that by regulating false health information governments are manipulating the public (Rossi and Yudell, Reference Rossi and Yudell2012), interfering in the autonomy of individuals to engage with health information on their own terms, and disrespecting the intrinsic moral worth of the human capacity for rationality, which would be unacceptable. However it is equally possible to argue the opposite, that regulating false health information facilitates autonomous decision-making (Ruger, Reference Ruger2018; Stroud, Reference Stroud2019).

From the perspective of virtue ethics and capability theory (Alexander, Reference Alexander2016), the regulation of health information to prevent the spread of misinformation could have the effect of limiting and restricting online and other freely accessible channels and technologies that increase health literacy and help to address health inequity (Kickbusch et al., Reference Kickbusch, Pelikan, Apfel and Tsouros2013) – the resulting restriction of access to health information generally would have a disproportionate effect upon disadvantaged populations, which would be inconsistent with virtuous behaviour, the promotion of human health capabilities and ideas of social justice. However, once again, the opposite argument could be made. Since governments are uniquely empowered to take actions to improve public health, refusing the opportunity to do so could be considered irresponsible (Rossi and Yudell, Reference Rossi and Yudell2012).

To produce a suitably nuanced ethical analysis of health misinformation, a pragmatic approach that draws upon multiple theories is necessary. A detailed exposition of such an approach is beyond the scope of this paper, and must be the subject of further detailed research. Here, we have the more modest ambition of highlighting the necessity of analysing the ethics of health misinformation regulation, and the challenges inherent in this analysis. A pragmatist approach is the one that we suggest, however it is not the only multi-principled ethical framework that might be suitable. The five virtues of medical practitioners – trustworthiness, integrity, discernment, compassion and conscientiousness (Beauchamp and Childress, Reference Beauchamp and Childress2013) – may also offer a framework for ethical analysis that accommodates the complexity of health misinformation regulation. At the very least, proposed interventions should be scrutinised from multiple ethical perspectives to build up a holistic picture that policymakers should then use to make a decision as to whether, on balance, the intervention is ethically legitimate. The use of ethical evidence in this manner should be an equal part of the policymaking process, alongside legal and political assessments.