What role does science play when people make health decisions?
Sociologists reporting in the December issue of the Journal of Health and Social Behavior try to unpack this difficult question. They conducted in-depth research on a group of women living on Cape Cod who had participated in the Silent Spring Institute’s Household Exposure Study. Cape Cod is of interest because it has a high rate of breast cancer and a high degree of environmental contamination.
What the sociologist’s wanted to find out was how each woman would make sense of and take action on information on her body burden of industrial chemicals (such as PCBs and phthalates), information on chemical exposures in her home based on air and dust samples, and information on the association of those chemicals with common household products. Virtually all of the women in the study had levels of numerous chemicals in concentrations above EPA or other guidelines. Each woman’s results were presented to her in a form that compared her results with the other women in the study in addition to the guideline. Each woman was able to discuss her results at length with researchers.
One of the unique features of the Silent Spring Institute study is that it is a community-based, participatory research project. That means the participants were intimately and actively involved with the project and had a great deal of access to researchers.
For the most part, the women were surprised by the results—but few were alarmed. Many talked to people they knew and did media research including on the Internet. Some even spoke directly to toxicologists involved with the project. So this was not a case of passive patients nor was it an instance of “Thanks for your body fluids. Good-bye and good luck!”
Some telling results…
One result was that most of the women made sense of their body burden by attributing it to external sources: polluting industries, dumping, power plants, military installations, and the like. Many had trouble making sense of the chemicals in their home’s air and dust. These women did not see themselves as users of the products identified as potential sources. In other words, sources of toxic load inside the home did not quite make sense, whereas the idea of an external source did.
Another result was that most of the women made sense of the health risk from their body burden by comparing their levels to other participants, not in relation to the guideline. In addition, so long as she wasn’t at the very top of the range, a woman tended to see her body burden as “normal,” as nothing to cause alarm. However, many were very dissatisfied with the failure of the “experts” to clearly state whether she was at risk. In fact, over the course of the interviews, the degree of concern tended to increase.
Finally, some of the women had follow-up tests. Many made changes in their lifestyle in response to the first round of tests, changes such as stopping the use of pesticides and scented laundry products. The women who saw no change in their body burden on the second test subsequently became active in environmental groups. That is, shifting from lifestyle changes to social activism.
This last might seem to be the only rational response of the three. I think they’re all rational, they do make sense. To understand why, remember that we are social creatures who get meaning, who turn data into information based on what we learn from people we know, from what we observed other people doing, and from the media and other external sources that turn data into information, including activist organizations.
So, in an important way, making households and the people who live in them safe from what’s in household products doesn’t depend so much on better or more science but on changing our social landscape so it’s common knowledge that household products can create health risks. That doesn’t come from science—or only from science. It comes from what we learn from and teach each other, especially participating in activist organizations.