Rebuilding trust in public health

A few days ago, at the Boston Book Festival, I was part of a panel on health and disease. I was joined by two other authors who, along with me, shared some ideas from our recent books that came out in the last year. The last question in the session was from a young student, who asked us how we can rebuild trust in public health in the current moment. This question is relevant for so many places around the world in the era of misinformation and massive funding cuts. We were out of time, so all of us on the panel gave very short – and perhaps not very satisfying – answers. But her question made me think of an incident from a few years ago.

During the pandemic, right around the time when the vaccines were first coming to the market, I got a chance to speak (remotely) to students in a biology class in a high school that had majority of its students coming from socio-economically disadvantaged backgrounds. Those were days when we all were trying to figure out zoom and were fidgeting around mute buttons and cameras capturing us in unflattering moments. Towards the end of my talk, a young African American student asked a question. She asked me that while she understood the need for vaccines, how we knew that this was not going to be another Tuskegee. By Tuskegee she meant the four decades long study, from 1932 to 1972, supported and sponsored by the US Federal Government to study untreated syphilis among African American sharecroppers (most of whom were very poor) in Alabama. The participants in the study were denied treatment, despite potent drugs becoming widely available by 1940s, in order for the researchers to 'understand the disease and its natural progression'. There was no informed consent. During the course of the study, dozens of participants died, many suffered immensely and all were misled and deceived.

The Tuskegee study that ended only after a journalist broke the story is now considered a major topic in bioethics, consent, racism, and injustice against the weak. The student who asked me this question knew both the history of public health in America and the suffering of poor communities. Her question was polite and simple, but it asked something quite fundamental. Why should she, a young African American woman coming from a poor background, trust the government? I was not prepared for this, and I do not think I had a good answer. I told her what I thought was true then, and I still believe it today. Trust has to be earned, maintained and never to be taken for granted.

Over the last few years, I have thought more about this. How should we build trust in our own public health measures? Too often, we blame people's lack of education or knowledge or awareness. It is easy to say that because people are not educated, they cannot fathom how wonderful modern medicine is, or because they lack higher education they cannot understand what evidence-based interventions are. That, in my view, is simply an elitist argument with layers of anti-poor views that many of us hold dear. The reason people may not trust public health measures is because they have little reason to trust. The reason many choose 'foreign' manufactured medicines over locally made ones cannot simply be blamed on colonial hangover. It is because of a long history of corruption, deception and poor-quality control associated with local medicines. Endorsements by celebrities are less likely to convince a skeptical consumer when there is the weight of history.

I do not have all the answers for the questions that students have asked me about trust, and I am not sure I ever will. But I do know that building and maintaining trust in public health starts not with bombastic claims, but with humility. Trust building requires honest acknowledgement of the errors of the past, a deep commitment to transparency moving forward, and above all treatment of people with dignity and respect. Ultimately, trust too can be infectious, but only in an enabling environment that is built on honesty, reflection and human dignity.