There is an interview with Carolyn Goodman, the Mayor of Las Vegas, by Anderson Cooper. Many people have linked to this interview to dunk on the Mayor, who wants her city to abandon social distancing and go back to work now. But that dismissive take misses something important. The interview shows us that many smart, educated laypeople don’t grasp much about research ethics. This is a deficit in our civic education and one that we should remedy in the new world we have been thrust into.
First, please watch the interview (if you don’t want to watch the whole thing, start at about 22:00).
The conversation is long and remarkably deep (by cable news standards). There are also several ugly passages. Goodman disclaims her responsibility for the safety of her citizens. In a remarkable lapse, Cooper calls her “ignorant.”
At about 22:10, the conversation jolts to evidence-based medicine. Cooper had been attempting to hold Goodman accountable for the deaths that he anticipates would occur if she lifts social distancing in Las Vegas. The Mayor challenges Cooper about whether he truly knows whether social distancing saves lives. What she means, it becomes clear, is that his belief is not grounded in data from experiments. She has absorbed, from somewhere, a view on the relative merits of different kinds of medical evidence. Right or wrong, for a politician, it’s a sophisticated take.
She then says (at about 22:20) that, “we offered to be a control group” for a trial of the effectiveness of social distancing. Goodman wants Las Vegas would to leave social distancing to revive its hospitality businesses, which would provide jobs to residents. However, the city’s residents would also serve as a comparison for jurisdictions that do practice it. Startled, Cooper asks, “You’re offering the citizens of Las Vegas to be a control group?” She corrects him that she offered them as a control group, but that her statistician (she has a statistician?) raised a design objection that made the idea impractical.*
What astonished me was that she was not aware that it would matter whether Las Vegans consented to be part of a trial that would put their lives at risk. Except under exceptional circumstances, you cannot expose a person to risk in a medical study without their informed consent. From the Belmont Report that helped define this concept,
1. Informed Consent. — Respect for persons requires that subjects, to the degree that they are capable, be given the opportunity to choose what shall or shall not happen to them. This opportunity is provided when adequate standards for informed consent are satisfied.
I don’t know that Anderson Cooper got this either. He was clearly taken aback by the Mayor’s offer of her citizens as a control group. However, his later comment about “the placebo [group] getting the short end of the stick” suggests that his primary concern was, understandably, for the health consequences of this outlandish proposal. Did he even notice that the Mayor believed that she could volunteer the citizens of Las Vegas for participation in a highly risky trial?
What should we learn from this?
Public health responses to pandemics have suddenly become a central issue in every polity. We are in a moment like AIDS, a time when research ethics issues that were previously of concern only to academics became life or death concerns for communities of ordinary citizens. This time, however, the affected community is the entire world. Moreover, research ethics concerns will remain relevant to public affairs at least until we develop effective methods to treat and prevent COVID-19. But even well-educated US citizens seem unable to think fluently about bioethical concepts. My view is that research ethics should become a standard part of civic education.†
It’s not clear, though, what the content of that education should be. If Mayor Goodman were to read this post, she would have a rejoinder to the concerns I have raised about her insensitivity to respect for persons and informed consent. She could object that the research ethics deriving from Nuremberg and Belmont are inapplicable in our current situation. I imagine her arguing as follows:
- “I deny that we have an evidence-based consensus about the public health strategy that will result in the most well-being for my citizens.”
- “Every course of action available to me imposes risks on the citizens of Las Vegas. There isn’t even the logical possibility of acting in a way that does not expose people to serious risks.”
- “Individual informed consent in this situation is infeasible.”
- “The people of Las Vegas elected me! The action I propose is what the majority of them want. The democratic legitimacy of my decision is the best consent you can get in this situation.”
- “GTF outta my way.”
I don’t have a well-formed response for the Mayor. I can say that these decisions will be made politically and we need a research ethics adapted to that fact. Public health ethicists ought to engage with our political theory colleagues and come up with something that works in democracies that are, like ours, in peril.
Learning from Las Vegas (Venturi and Scott-Brown, 1972) is a central text of post-modernist architecture. The authors criticized the austere abstraction of high modernist buildings (e.g., the Seagram building in Manhattan) and urged architects to learn from the decorative, demotic architecture that, they argued, most people actually want.
*I don’t find it credible that the conversation as the Mayor presents it ever occurred. To be charitable to her, I’ll assume that the Mayor said something like this as a kind of thought experiment to help justify her proposal to lift social distancing. That is, my bet is that there was never an actual design for such a study. What is distressing is that this was, even as a thought experiment, conceivable.
†And some biology, epidemiology, economics, moral philosophy, statistics,…