Building Trust Against Viral Misinformation
Addressing COVID-19 misinformation and medical mistrust.
This article follows our #EDIYourSci Workshop Series, in which we explore science communication incorporating equity, diversity, and inclusion (EDI). We aim to question and critically discuss the ways science communication is done and how we can move forward to integrate non-traditional methods and EDI in our practices. The following conversation took place on February 25, 2021.
by Ashley Albert & SciComm Collective
Graphic by Julia X. Luo
Image Description: The event title “A Conversation About Viral Misinformation and Medical Mistrust” sits in a purple speech bubble; panelists names “Dina Al-khooly, Dr. Roopali Chaudhary, and Dr. Hiba Zafran” are listed below. Three key points highlighted in bright yellow read “(1) Vaccine information needs to be accessible & culturally sensitive. (2) Science communication needs empathy & humility. (3) Science outreach involves peer-to-peer learning & listening.” Greyed-out icons of a syringe and two figures talking with one another accompany the text.
To assume that COVID-19 has equally impacted everyone would be a mistake. Racism, at both structural and individual levels, has resulted in marginalised communities being affected by COVID-19 to a much greater degree. Discrimination faced by marginalised groups throughout this pandemic has been perpetuated by both the general public and the medical community.
None of this is new. Medical practices and healthcare policies have often negatively affected marginalised groups at a much higher rate. The International Justice Resource Centre (IJRC), for example, noted that “Indigenous women in Canada have been subjected to forced sterilization in public hospitals, going back many decades and into 2018. This practice appears to disproportionately, and possibly exclusively, target Indigenous women.” While we often like to distance ourselves from problematic practices in history, this is just one example of prevalent medical racism in Canada.
Science communicators often hope to reach out to these marginalised communities with their work, yet in some cases, this history of harm has inevitably led to mistrust of health scientists and the colonial medical system. Recently, the COVID-19 vaccine in particular has been met with hesitancy and mistrust in many communities. In these instances, what can science communication groups and community organisations do to build trust and increase public confidence in vaccination?
SciComm Collective initiated a conversation on misinformation and mistrust in February with panelists Dina Al-khooly (she/her), Director of Research and Evaluation at Visions of Science; Dr. Roopali Chaudhary (she/her), founder and CEO of Lotus STEMM; and Dr. Hiba Zafran (she/her), an occupational therapist and psychotherapist, and Assistant Professor at McGill University.
The conversation opened on the topic of vaccine hesitancy. Al-khooly, Chaudhary, and Zafran all cautioned that vaccine hesitancy is not necessarily the dominant sentiment expressed in the low-socioeconomic, South Asian, and Indigenous communities with which they work. Crucially, we as science communicators should be careful in making generalising assumptions about communities that have been disproportionately impacted by the pandemic, and thus are carefully following public health measures. In order to get a comprehensive understanding of hesitations that may be present within communities, we first need to understand individual concerns.
To this end, Zafran gave an example of a James Bay Cree community in Northern Quebec that saw the vaccination of 90% of its medically vulnerable. This high vaccine uptake rate demonstrates that First Nation community members are willing to get vaccinated, if it is accessible to them. Operation Remote Immunity, a partnership between ORNGE and Nishnawbe Aski Nation, is an additional example that saw overwhelming COVID-19 vaccine distribution success within First Nation communities. An estimated 24,000 vaccine doses have been administered through the initiative, attesting to the idea that marginalised peoples aren’t necessarily “anti-science” despite their historical exposure to scientific malpractices.
However, emerging discussions about the mandating of COVID-19 vaccination can be a sensitive and alarming subject for certain groups of people. Many fear a mandatory COVID-19 vaccination may lead to the implementation of vaccine passports – a historically discriminatory and oppressive practice – which are already being considered in some countries.
The topic of vaccine passports or regulated travel may elicit mistrust and intergenerational trauma for particular marginalised groups. Indigenous communities, for example, endured limitation and policing of their movements through the pass system, which required all First Nations peoples living on reserves to get written permission from an Indian Agent when they wanted to leave. Similarly, Chaudhary shared that during the 1900s cholera pandemic, many Arab and South Asian people were forced to carry a health passport that indicated their disease status. The practice was implemented due to the racist (and false) beliefs of the colonial British that Arabs and South Asians were responsible for the cholera outbreaks.
Vaccine hesitation in marginalised communities should thus be addressed from within, by trusted members of the community, rather than by external groups. As Chaudhary stated, “the people we trust are the people who are within our network.” Whether family, friends, Elders, or religious leaders, community members have the personal relationships and cultural understandings necessary to address the roots of hesitancy. When conversations are taking place, community members also need to be given safe spaces to ask questions and express concerns, without being swiftly labelled as “anti-science” or “anti-vaccine.” Discussions about the known risks, benefits, and costs related to vaccination need to be honest and transparent, rather than sensationalising outcomes or minimising worries.
As a result, Lotus STEMM has been working with local community organisations to answer questions about the vaccine in more transparent, accessible, and approachable ways. They do so through COVID-19 explainer videos in different languages and by communicating verified medical information through WhatsApp groups. Similarly, Visions of Science recruits youth to engage in lateral forms of science communication through peer-to-peer conversations. Al-khooly notes that strategies that engage communities from within have been largely overlooked by science communicators – and reminds us of the importance of spotlighting voices that do not represent the scientific and political institutions at the source of harm.
Finally, while COVID-19 is certainly an unprecedented pandemic in our lifetime, we should not ignore other ongoing pandemics affecting marginalised or vulnerable populations that receive much less attention and mobilisation. In the context of infectious diseases such as tuberculosis and AIDS, Zafran names the selective focus on COVID-19 as additional reasons for the feelings of mistrust, resistance, and anger felt by marginalised communities. Tuberculosis, for example, largely affects colonially-controlled countries and Indigenous communities in the North of Canada, and remains largely under-funded and under-addressed. The fatality rate of tuberculosis is much higher than COVID-19, but since the majority of those affected are not rich and white, as Zafran describes, tuberculosis receives much less scientific and governmental mobilisation.
Ultimately, medical mistrust is a result of white supremacy. Being aware of the injustices created by our political context is inextricable from understanding the medical mistrust felt in marginalised communities. Al-khooly reminds us that science and medicine are not exempt from these structural inequities. Acknowledging this may be crucial in preventing misinformation.
As a marginalised person, my views on medicine and science are inevitably shaped by the harmful colonial practices that have been, and continue to be, inflicted on my community. This conversation encouraged us – as scientists, communicators, decision-makers – to reflect on the lived experiences of marginalised peoples and understand their source of mistrust. Science communicators need to actively research the history of medical malpractices and the deeper reasons for vaccine hesitancy present in the communities they serve. Rather than question others, we should ask ourselves: What actions have led to these negative reactions – and who is responsible?
Editor’s Note
May 25, 2021
This conversation touches on topics of colonial occupation of India and harmful practices such as the implementation of health passports during the 1900s cholera pandemic. We want to acknowledge the injustices that continue in present-day India. In the past month, a new COVID-19 surge has left devastating impacts, yet the country’s access to vaccines remains limited. Click the attached links to learn more about the vaccine apartheid in India and what you can do to help.
Author Bio
Ashley Albert (she/her)
Ashley Albert is Bear Clan from Oneida Nation of the Thames First Nation and Chippewas of the Thames First Nation. As a communications professional, one of Ashley's hobbies is to write articles as a freelance writer. Ashley does not have a science background, but loves to learn new things by attending different workshops/webinars.
