Basic Knowledge

I haven't ranted very much lately about the democratization of science, and mea culpa. So the theme for today is that we can't have a more democratic scientific institution if most people lack the basic knowledge they need to participate.

This is the story of my professional life, actually. My day job is with a community based public health agency, and my academic half is concerned with people's control -- or usually lack thereof -- over their own health and health care. (As I often say, I am a community-academic partnership.) My work concerns all sorts of issues -- mental health, addiction, environmental justice, diabetes, heart disease, you name it -- but HIV is a particularly big piece of it, in part because it has paradigmatic qualities that make it particularly instructive for many of the principal concerns of medical sociology.

Sociologists are interested in the "sick role" and how disease shapes identity, and HIV is a powerful shaper of identity, with particularly strong components of stigma, disability, community and empowerment vs. disempowerment. It's a chronic disease that people have to live with their whole lives. Its treatment is complex and requires intense, ongoing involvement with physicians and the medical institution. Treatment adherence is particularly challenging. People with HIV are a preoccupation of public health authorities, advocates and researchers because they are infectious, but in a way that is fully under their control; and because every person with HIV is a potential incubator of drug resistant virus. These related facts mean that each individual's treatment adherence, as well as their sexual and drug injecting behavior, is of concern to society in general and government agencies in particular.

So, people living with HIV have to navigate all these complexities, for the sake of their own health and autonomy, and for the sake of others. And, people who aren't HIV infected have a responsibility to understand the facts about the virus and engage the problem with both compassion and reason. Unfortunately, the average person has such limited knowledge of biology that it just isn't working very well.

Of course, once people are told that they are HIV infected, they try to learn what they need to know about their condition. But without basic knowledge of cellular biology, and evolution, many people just never really get it. I sat down once to write a basic explanation, in accessible English, of what a virus is, what a retrovirus is specifically, how HIV causes disease, how the antiretroviral drugs work, what drug resistance is and how it comes about. I thought I'd done a pretty good job, so I showed it to an HIV educator. "Oh, this is too technical," she said, "people won't follow this." But I had begun at the beginning, and explained everything, step by step, from cells to DNA and RNA and enzymes and evolution. That was just too much for people, apparently.

So instead, people are given vague and misleading metaphors, often military. HIV is the "enemy soldiers," the drugs are our soldiers, and we need to keep them in the field so the enemy can't advance. The virus "attacks" cells. And the virus is "intelligent," it can "learn" how to get around the drugs. One woman I interviewed personalizes her infection, she refers to HIV as "she." Somebody told her that viral load is a measure of how many baby viruses the mother virus is having.

Many HIV educators and advocates say we should respect these ideas, that they are somehow "indigenous to the community" and represent the points of view of the authentic people, that it's somehow insulting or elitist (yup) to tell people they are inaccurate. I think that's nonsense. People have been told these things by professionals acting as health care providers and HIV educators, who are just too lazy or don't have the time to tell the people the truth and work with them so they can understand it.

I'm not sure what to do about the general ignorance of biology, and that includes far too many high school biology teachers. But it's something we must fix.