How much should you trust research ethicists’ warnings about public distrust?

By Nir Eyal

In many places around the world, declining levels of public trust in health officials, medical advice, and medical products are causing damages to personal and public health. For example, distrust is a major contributor to the low uptake of COVID-19 vaccination in many countries. Understandably, bioethicists seek to heed the potential of their own recommendations for positive or for negative effects on levels of public trust. And multiple ethicists have recently sought to found research ethics primarily on the need to shore up public trust—in investigational products, or in the research, clinical, and public health enterprises in general. In the debate on testing COVID-19 vaccine efficacy through human challenge trials, one argument against these trials is that they are liable to undermine public trust of the resulting vaccine products and vaccination efforts, as well as other pandemic response efforts, or participant recruitment and vaccination campaigns for non-COVID causes.

In that spirit, research ethicists skeptical of COVID-19 human challenge trials warn: ‘Mistrust of research and of vaccines in particular is rampant; conspiracy theories, misinformation, and anti-science attitudes are spreading. Bad outcomes in a SARS-CoV-2 human challenge study could be devastating…’ They and others recall the tragic case of Jesse Gelsinger, and some summarize: ‘undertaking [a human challenge trial] in the context of this pandemic risks fueling and potentially worsening levels of public mistrust.’

Tempting as it may be for bioethicists to jump to the rescue of public trust, my extended essay argues that we, research ethicists, often lack the advanced empirical proficiency to predict reliably what would shape public trust one way or the other. Many warnings about the woeful potential effects of COVID-19 challenge trials on public trust rest on crude, speculative, or refuted empirical generalizations. Some use normative criteria that, if applied evenhandedly to other pandemic responses, would rule out many bread and butter product testing- and non-pharmaceutical interventions. In order to avoid a battle with vaccine skeptics, such warnings risk losing the war to them. They lean status quo and conservative. They offensively assume that the public would never accept as ethical a trial that is in fact ethical. My essay surveys other epistemological and ethical faults.

All in all, the extended essay counsels greater caution in attempts to anchor bioethics and research ethics, and specifically the ethics of COVID-19 challenge trials, in the (very real) need to protect public trust.

 

Paper title: Research ethics and public trust in vaccines: the case of COVID-19 challenge trials        OPEN ACCESS

Author: Nir Eyal

Affiliations: Rutgers University Center for Population-Level Bioethics

Competing interests: NE serves on the Advisory Board of 1DaySooner (a non-profit promoting human challenge trials in COVID-19), an unpaid position.

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