Last week, Robert F. Kennedy, Jr. and David Kirby published an article about autism on the Huffington Post. They were writing about how remnants of the Bush administration sabotaged funding for research on the relationship between vaccinations and autism. The actions of these members of the Interagency Autism Coordinating Committee blocked the allocation of funds specifically designated for such research by the Combating Autism Act of 2006. As Kennedy and Kirby point out, these men and women promote vaccination and some are on the payroll of the drug companies that manufacture vaccines. Each represents a Federal agency. Although there are civilian members of the Committee, the agency members outnumber the civilians by over two to one.
A major point of the article was that the vaccine-autism theory is now generally accepted as a legitimate subject of research in mainstream science. Of particular note is the increasing attention paid to this issue by many government agencies and programs, such as the CDC, Department of Health and Human Services, and EPA. There was a time when that wasn’t so. What made the difference was the activism of citizens supported by concerned scientists.
The point this makes is that the image we have of progress in science as an arcane and rather private affair among the experts is nothing of the kind. First of all, what counts as good science has a good deal to do with the careers and connections of the scientists designing and conducting the research, making pronouncements on its meaning, and deciding what research is worthy of funding and what is not. This is not to say that science is a sham, that it’s a cesspool of greed, corruption, and venality. It is to say that there’s a sociology to science that is a curtain behind which we are not supposed to look because we are supposed to believe that, when doing science, scientists cease to be human beings.
The second, more important point is that participation by concerned citizens is an essential feature of scientific progress. This is not the idea that public concerns should set the scientific agenda after which the scientists disappear into their labs and emerge with the answers. It is the idea that what is important to understand, how it is understood, and how scientists go about their business is directly affected for the better by citizen participation. Participatory science is better science.
The concept of participatory research is well-established in community organizing and community development. It’s the practice of involving the subjects of study in the design, data collection, and interpretation of a research project. It’s a concept that is directly applicable to health and medical science. Unfortunately, participation is forced upon research institutions and Federal and State agencies directly by citizen activists and indirectly by their elected representatives. The Interagency Autism Coordinating Committee is one of many examples, where experts outnumber civilians and the process by which the whole thing is put together is rather murky. Instead, citizen participation should be an integral part of the scientific process.
But wait! You can’t let loose a bunch of untrained people into laboratories! Interpreting test results! They’re not experts! They’re not qualified!
Exactly. Knowledge isn’t restricted to what comes out of a laboratory or a statistical model or any of the other forms in which science is conducted. There is local knowledge, the shared understanding by a community of its unique locale, history, and needs as distinct from knowledge created by such methods as epidemiology and social network analysis. There is embodied knowledge, individual health and illness as experienced by the person in all her complexity as distinct from a diagnosis assigned by an expert to which that person is then confined as an object of health and medical science. All these forms of knowledge deserve respect. They all need to be part of scientific progress.