Trust and Transparency in Quarantine

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Parker Crutchfield, PhD

As of February 11, more than 1,000 people have died from the novel coronavirus, the vast majority of them in China. As the virus spreads, China has been implementing the largest quarantine in human history. The virus has spread beyond the borders of China, and has been observed in at least twenty-four countries. There is no way of knowing how effective the quarantine has been. It obviously didn’t prevent the virus’s spread, though it’s likely fewer people are infected because of it. Part of the reason that the quarantine has not worked to prevent the spread is that many in China evidently don’t trust those implementing the quarantine. About five million people left Wuhan before the quarantine locked down the city. And the images in this video are certainly not of a family trusting their government.

Trust and quarantine
A prominent account of what makes public health interventions permissible implies that public trust is necessary for public health interventions to be morally permissible. As a general rule, this is false. Public trust in Flint has been totally undermined. But in that city, public health interventions on the water supply are not only permissible, they are obligatory. So, it’s not true that trust is necessary. But that is not to say that public trust isn’t critical to the value of a public health intervention.

Trust and mistrust street signs image
Image description: two green street signs with white lettering, one reads “trust” with an arrow pointing to the right, the other reads “mistrust” with an arrow pointing to the left. Image source: Pixabay.

The value of a public health intervention, and its moral authority, is primarily a matter of the value of the benefit it achieves (the value of the cases prevented) minus the disvalue of the burdens it requires people to bear (the disvalue of social isolation). Trust may not be necessary, but it certainly impacts the benefits and burdens of a public health intervention. There is significant benefit in not having five million people evade a quarantine because they mistrust those implementing it. Who is more burdened, the family who fights tooth and nail the officials forcibly removing them from their home, or the family who goes willingly because they trust them? Mistrust creates burdens; trust promotes value. In other words, mistrust encourages people to break quarantine. If the goal is to encourage social isolation and compliance, public trust is key.

Trust and transparency
If trust is so important to the effectiveness of a quarantine, what factors promote trust? That same theory of the morality of public health interventions derives the value of transparency from the claim that transparency promotes trust. The idea is that the more open policy decisions, the more the public will trust them. As before, this is not generally true. Some research indicates that transparency actually undermines trust (De Fine Licht, 2011; Grimmelikhuijsen, 2014).

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Image description: A screen display on the side of a building showing “early discovery, early report, early quarantine, early diagnosis, early treatment” during the Wuhan coronavirus outbreak in Hefei, Anhui, China. Image source: Zhou Guanhuai/Wikimedia Commons.

That is, the more people know about policy implementation the less they trust the people implementing it. If accurate, this research suggests instead that if we want people to trust public health policies, information should be withheld from them. This is in line with earlier research that suggests what people really want is for decision-makers to be empathetic and non-self-interested and that, if they are, for them to make mostly non-transparent decisions. People may want “stealth democracy” (Hibbing and Theiss-More, 2002).

So, probably it is not generally true that transparency promotes trust. But quarantine might be a special case. When the public already mistrusts those implementing public health policies, it’s not clear that there is any way to rebuild trust other than by being transparent. China was already in a tough spot, after their mishandling of the SARS outbreak in 2003, about which officials withheld information from the public and the global health community. Combined with the attempted silencing of the coronavirus whistleblower and his recent death, officials’ actions set the stage for a mistrustful public and less effective quarantine.

The next outbreak
Given officials’ actions in response to SARS, the public response to attempts to control coronavirus was probably never going to be trusting. Regardless of when the next outbreak occurred, the public was never going to trust the interventions to control it, whatever they happened to be. That was determined in 2003. Transparency now won’t help trust now, and so it won’t help the effectiveness of the present quarantine or any of the other interventions, such as the disinfectant now being sprayed. The damage to the present is done. Sadly, given that officials have responded like they did in 2003, interventions aimed at controlling their next outbreak, whenever that happens to be, will be upon a mistrusting public. When that time comes, if officials choose to quarantine, it seems likely that that quarantine will elicit similar responses: people will evade and resist, grabbing door frames as they are pulled from their homes. The virus will not be contained as well as it could have been, and more people will get sick and die. Present transparency could have promoted future trust, greater compliance, and prevented sickness and death, but that opportunity has come and gone.

There is a lesson for local officials as they try to intervene on the ongoing water crisis in Flint, the PFAS scare in West Michigan, and, in my hometown, the threat of mosquito-borne illness. The lesson is: transparency now purchases trust later. And that trust may prevent suffering and save lives.

parker-crutchfield-cropParker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 5, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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More Bioethics in the News from Dr. Crutchfield: Public Health Crisis Warrants Liberty RestrictionsWe Should Tolerate and Regulate Clinical Use of Human Germline Editing

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The face of Zika: women and privacy in the Zika epidemic

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series.

By Monica List, DVM, MA

A quick online search for “Zika” reveals two kinds of images, those of vectors and those of victims. Images of Aedes sp. mosquitoes, vectors of the Zika, Dengue, and Chikungunya viruses, dominate the virtual landscape, followed closely by images of infants and children with microcephaly, as well as women; some pregnant, some caring for children with Zika-related congenital conditions. This abundance of images of children and mothers affected by Zika is not surprising, as they are, in fact, the populations most seriously harmed by the virus. There is now enough evidence to infer that prenatal Zika virus infection can cause microcephaly and other brain anomalies in the developing fetus (Rasmussen et al 2016). Embedded in public health communiques and media coverage, these publicly available images are undoubtedly an important part of the narrative of the Zika epidemic; they provide a face and a human dimension to a risk often perceived as distant and abstract by residents of latitudes currently unaffected by the virus. In this sense, the images perform an important role; they humanize, contextualize, and help raise awareness of a serious disease that is expected to continue to spread (CDC, 2016). Regardless of the many ways in which these images can improve our understanding of how Zika is affecting the lives of people worldwide, and may eventually affect ours, we must exercise caution in our use of them. These images are not just representations of bodies, they are instances of a person’s life, and furthermore, often present facets of that life that are considered private to some extent, such as pregnancy and illness.

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Adult, male mosquitoes are inspected by an IAEA technician at the Agency’s Insect Pest Control Laboratory in Seibersdorf, Austria. Image source: Dean Calma / IAEA via Flickr.

While privacy is a central topic in bioethics, the kind of privacy at stake in this case may not fit neatly into bioethical definitions and guidelines. Forms of privacy relevant to bioethics include informational privacy, physical privacy, decisional privacy, proprietary privacy, and relational privacy (Beauchamp and Childress 2013). It is plausible to say that media representations of these mothers and children include most of these forms, but also other aspects that may fall outside of these definitions. A BBC News report on babies born with microcephaly attributed to in-utero Zika infection in Pernambuco, Brazil, not only shares private information such as details on the health and pregnancies of the featured mothers, but also allows us a very close look at their private lives; their homes, bedrooms, and even the intimate suffering caused by disease. Even if subjects have consented to the use of their likenesses and stories, is this an encroachment on privacy, and if so, one that would fall within the purview of bioethics?

In bioethics, discussions of privacy generally focus on situations involving patients or subjects in medical care or research settings. Beyond these settings, safeguards such as Institutional Review Board approval are in place for most other research done in an academic setting or for academic purposes, but the same does not apply to non-academic research, including journalistic investigation. While journalism has its own set of ethical principles and guidelines, these tend to be more flexible regarding notions of privacy; the sharing of information that might be considered private in a healthcare setting is allowed in the media under the freedom of press principles. A common protection available to subjects in both healthcare and media settings is informed consent; in both cases one of the main roles of informed consent is to protect subjects from harm, acting on the principle of respect for autonomy (Beauchamp and Childress, 2013). Considerations of autonomy and harm are central to ethical dilemmas in journalism, but they tend to be open to interpretation, arguably more so than in bioethics (Richards, 2009). Furthermore, this interpretation is influenced by where loyalties lie in each case; for healthcare practitioners and researchers, the patient or subject is the priority, while journalists have a prima facie duty to the public interest (Canadian Association of Journalists, Ethics Advisory Committee, 2014). Another issue with consent in this case is that while consent may change over time, it would be practically impossible to completely remove the availability of images and stories that have already been made public, especially with the growing use of the internet and digital communications. One can assume that even if the content is eventually removed from the digital sphere, the images and stories of these mothers and children can be downloaded, saved, and shared without limit.

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In Recife, Brazil, Minister Teresa Campello talks to residents of Recife, Brazil, as part of a Zika prevention campaign “Dia Nacional de Mobilização Zika Zero.” Image source: Ministério do Desenvolvimento Social e Combate à Fome on Flickr.

In this case, the insufficiency of consent is further complicated by the social location of people being portrayed. Although in theory privacy protections apply equally to all, privacy is a markedly gendered and raced concept. For example, since fertility and reproduction can be said to play a role in a nation’s sustainability, many governments see it as their business to legislate over women’s bodies, dictating if and how women have a right to make autonomous reproductive choices (Holloway, 2011). Notably, the majority of women portrayed by the media coverage of the Zika epidemic are poor women of color; part of the reason is simply due to the geographical location of the epidemic, as well as the fact that poor populations generally have access to less resources to prevent and treat disease. Populations whose medical care is attached to some aspect of identity, for instance age, gender, race, or ethnicity, and whose autonomy is diminished in relation to this identity are considered vulnerable (CIOMS, 2002; Holloway, 2011). In research and medical care, these individuals are subject to protections regulated at the international and national levels. While ethical guidelines in journalism also include special considerations for vulnerable subjects, definitions of vulnerability and how to manage it are often vague, and always weighed against the need to provide a public service (Richards, 2009). Usually, the only protection vulnerable subjects have access to is informed consent, which is of little use if their autonomy is already compromised. We must also consider that vulnerability goes beyond diminished autonomy due to one’s age, gender, or race; it also includes, for example, an increased exposure to social risks that can result in discrimination, loss of opportunity, and even violence. Zika-infected pregnant women portrayed by the media can find themselves under even greater public scrutiny, and may be denied access to options such as elective abortion and participation in research that could potentially help women in similar situations (Harris et al, 2016). But, this should not mean that we cannot access or share information about vulnerable subjects, it just means that as is often the case, consent is not enough, especially when this information is likely to be widely broadcasted.

Given the importance of these stories in shaping a public narrative of the Zika epidemic, and the risk of harming vulnerable subjects, bioethicists should take an active part in laying out guidelines for the sharing of this information. Some aspects to consider in these conversations are cultural assumptions about privacy, our purposes for sharing this information, and whether or not it is contextualized by a broader story—not simply a voyeuristic look into the suffering of others. Additionally, breadth of scope should generally be considered in order to assure that images and stories do not focus on one aspect of a broader problem. A more balanced coverage of the Zika epidemic should also focus on the stories of researchers, government officials, tourists, and others touched in some way by this crisis. Finally, the kinds of information outlets we are using should be of primary concern; information shared on the internet, a generally open and unregulated source, can widely expose intimate aspects of a person’s life, and cause harm beyond what we can imagine.

list-cropMonica List, DVM, MA, is a doctoral student in the Department of Philosophy at Michigan State University. She earned a veterinary medicine degree from the National University of Costa Rica in 2002, and an MA degree in bioethics, also from the National University, in 2011.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 2, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

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