Study participants reported gaining a new or expanded understanding of their everyday exposure to environmental chemicals. Participation in the study led participants to conclude at least one but often several of the six following points:
- Synthetic chemicals can be detected in household air and dust, and in human samples such as urine (e.g., “There's chemicals everywhere in this place!”)
- Most homes have chemicals. Many extended this message to assume that most homes, including homes outside the study, harbored similar chemicals, too. (e.g., “I just figured that was the way it was in every house.”)
- Homes contain a variety of different chemical compounds. For example, one participant expressed surprise that researchers found a total of 67 of the 89 target chemicals in sampled homes. As she noted, “I didn't even know there were that many chemicals, but I guess there's a lot more than that even.”
- Even banned substances, such as the pesticide DDT, were detected. The fact that chemicals could persist so many years after their use was identified as both new information and an unexpected research finding.
- There are numerous sources for chemicals found in urine, blood, and household air and dust. Many expressed learning that household cleaning products and beauty supplies were potential exposure sources for chemicals found in their urine, air, and dust. One woman's response characterizes a broader pattern we observed among participants: “I never stopped to think about some of the things that I just automatically buy and use.” While several participants routinely avoided aerosolized sprays, noting that they thought propellants could be “bad,” women reported learning that chemicals found in indoor air and dust samples stem from nonaerosolized forms as well.
- Many common, household sources of chemical exposures are unregulated or understudied. Some participants questioned why there is an absence of epidemiological and toxicological data for many chemicals, why there were few EPA health-based guidelines for chemicals in the study, or why few consumer or household products are safety tested.
Although study participants reported learning new information about exposures to chemicals, perhaps more provocative than what new information participants gained was their tendency to identify information gaps resulting from absent or uncertain health data. More than half of the study participants (N = 15) requested additional information about what the study results meant. They asked, Do these results signal a problem? What is “acceptable”? Where are these chemicals coming from? And, what should I do? Participants wanted more than a descriptive account of what was found, and more than a relative account of their results compared to others; they also wanted scientists' evaluation of their data for health implications and action. As one woman remarked, “every home also has corn flakes in the kitchen; but that doesn't tell me anything.” Another woman, who joined the study to understand her experience with breast cancer, noted that, “I basically feel I got nothing.” Yet, in these cases, participants desired information about potential health risks that does not yet exist.
For many chemicals, the scientists' capacity to offer more health information was hampered by the limited availability of government health-based exposure guidelines, information about routes of exposure, or effective exposure-reduction strategies.5
A few participants expressed frustration with the scientists because they worried the scientists had withheld explanatory information. Their frustration festered, even when participants requested more information and the scientists re-explained the uncertainty of personal exposure information, and even when participants understood the social and political circumstances that created data gaps. As one woman noted,
I think that if I said to her [the lead toxicologist on the study]: Specifically, where does this come from and how did I get it? I'm not sure she would answer me; I don't know that she could answer me.
Researcher: There's a lot that we don't know.
Participant: Mmmm. And I don't like that. I don't like that at all.
In response to these circumstances, study participants reached out to others. As indicated in the previous excerpt, participants contacted the scientists, but they also queried friends and family (e.g., a friend with cancer, a daughter with a medical degree, or a son with scientific training). They shared study results with their physicians or oncologists. Some participants consulted Internet resources or local libraries. One participant copied the results for her landscaper, who had applied pesticides to her lawn and garden. Yet, as these participants reported, their friends and contacts—including their physicians—had few new insights to offer. Left unresolved were lingering questions: Participants' narratives reflected puzzlement over how to interpret levels and make appropriate responses. The majority of interviewees also asked how other study participants responded to exposure data and whether their own queries were unique. Thus, most participants demonstrated that the study offered them new information about exposures that were not a previous concern.
In the next section, we present how participants responded to this information, including what participants said about the levels, sources, and responses to chemicals in their homes and body samples. Then, we show how participants reconciled insights about their personal exposure data with popular assumptions about the nature of chemical exposures and risk.
Sources: “Where Is This Coming from?”
One theme across interviews was a notable incongruity between women's perception of possible chemical sources and the chemicals in their air, dust, and urine. Participants often said they were perplexed by the number of chemicals detected. This puzzlement persisted despite the scientists' effort to inform participants about common household sources. Almost half of the participants (N = 11) reported some variant of the following statement: “I don't use a lot of products” so “I have no idea where any of this was coming from.” One woman remarked,
I'm surprised that they can find that many things by looking at your dust and looking at your air. I mean, that's amazing to me that they can actually find chemicals in your air in any amount whatsoever.
The discrepancy between data and perception can be explained partially by the unknown presence of many chemicals in everyday household, construction, and personal care products. Participants did not have to spray or apply a substance in order for chemicals to accumulate in dust or indoor air. Chemicals could originate from carpeting, upholstery, electronics, plastics, cleaners, pest control, landscaping, and personal care supplies, many of which contain unlabeled additives.
However, product-use seemed unremarkable and unmemorable to most participants, which suggests their use is a habitual constituent of consumer culture. Initially, when surveyed, many participants underestimated their product use. With additional questions and time for reflection, however, participants would recall products used in routine housekeeping and personal care. Consider the following exchange, which occurred as a participant scanned the list of common exposure sources provided to her:
I just, I don't use any of these things … when I look at it [the study results and the researchers' source list], I keep saying no to so many things. But, obviously, there is something. But, I keep saying, I don't have that, and I don't have this, and so on and so forth. I don't know.
This participant noted that her home harbored chemicals at levels “higher than in most homes.” Later, she raised several possible sources, but quickly rejected each one. Each possibility violated her understanding of what activities or products would be contributors. Similarly, another woman noted:
Participant: Well, you know what you shouldn't use, like the sprays—too many sprays. That's the one thing that they [the scientists] spoke about a lot, were the sprays …
Researcher: Like what kinds of sprays?
Participant: Well, of course I don't use any … Well, I don't use hairspray. I do use a bathroom spray. And, a countertop spray. Let's see what else. A window spray … That's it. I don't have a lot.
Participants more readily looked to historical uses of chemicals before inventorying current ones. Assigning contemporary exposures to historical uses was a prevalent theme. Some participants realized that homes could harbor potentially dangerous substances no longer used in residential applications. For example, several participants, when considering possible sources, would note the age of their home and suggest that older homes harbor remnants from former uses (e.g., “it's a really old house, and God knows what it's been treated with … over the centuries.”) Indeed, the age of a home does influence what chemicals are within it. With newer homes, the scientists did not expect to see high levels of lead, asbestos, or chlordane, since the United States banned household uses of these substances. However, participants were less primed to think about exposures from contemporary sources. One participant attributed her exposures to her old house while a can of household insecticide sat, unmentioned, on an end table beside her.
Levels: “Is This High?”
When interpreting their results, participants paid attention to the level
of chemicals more than they commented on the number
detected. Indeed, previous research has found that people read levels as social indictors of risk that dictate their response (Clarke 1989
). Similarly, chemical regulation historically has been attuned to levels—measuring the level of exposure, estimating the levels at which no health effect is anticipated, and setting limits for acceptable exposures.
When possible, participants compared their results to government health-based guidelines depicted on the results graphs. Participants used guidelines to anchor their assessment of whether their levels were cause for concern. Results near or below the guideline were less noteworthy than those above it. Many of these benchmarks, however, do not reflect current scientific knowledge about potential cancer and noncancer health risks, rendering seemingly “acceptable” levels potentially more problematic than the graphs may depict. Most participants did not question the validity of these guidelines, though some did, and a few broached whether the guidelines changed over time or why so few of the chemicals in the study had guidelines.
In addition to calibrating their concern based on whether levels were lower than regulatory benchmarks, participants based interpretations on comparisons between their samples and those of others. When asked if their results seemed “high,” participants most often said “no,” unless the amount in their home was considerably higher than others. If their results fell mid-range, or if a detected chemical was found in most homes, as was common, their concern dropped precipitously. Consider this exchange:
Researcher: Would you say that the results were high or concerning in any way to you?
Participant: [While flipping through results] Well I think that in some instances, they were high, you know … they're way up there. So I don't have anything to compare it to, you know, maybe they're wonderful…. So, I didn't get too alarmed because they look sort of middle range. And maybe if, you know, I'd come out up here [points to higher end of the sample distribution] or some place, and I was real nervous about that, then I probably would have read this [pointing to the list of possible sources for each chemical]. I mean, I'm interested, yes, but it didn't mean a thing to me unless it was something very, very bad.
When levels appeared “in the middle,” participants perceived them as neither high nor as “raising red flags.” When women scanned their graphs for levels that appeared as abnormal, they often saw their data points clustered among others. In these instances, participants interpreted their levels as “average” or “normal,” for example, offering this typical response: “I'm the common man; I'm right in the middle.” For most participants, this perception of “average-ness” allayed concerns of health risk.
One participant turned the question back on the interviewer: “I'm just wondering if any of the levels are alarmingly high?” In one instance, she observed that the levels of a particular chemical detected in her home were the highest among anyone in the study, much to her surprise. Like others, she looked for a threshold value, a social cue, to tell her at what level she should be “alarmed.”
Though some women's homes may have had a large quantity of a particular chemical, or were one of the few homes in which a particular chemical was detected, unless the level appeared on the extreme upper end, women did not perceive the level as high and did not express concern. One woman's home, for example, was among only 2 of 120 homes in which a particular chemical was detected. Yet of those two hers was lowest. Her observation that someone else had a higher result allayed her concern.
Importantly, not all participants relied on levels to gauge whether their results warranted concern. One participant, when asked if the results seemed high, noted that her concern hinged not on the level of chemicals detected, but on the number of chemicals found and the ubiquity of exposure across homes.
Responses: “Who Holds Jurisdiction over Chemicals in Homes and Bodies?”
When results did trigger concern, participants sought to control or remediate the situation through technological fixes, changing consumption habits, or both, and by addressing exposures symbolically. In similar situations, Edelstein (2004)
observes a popular adherence to “technological fallacies”—that exposures are technical problems to be “cleaned up” through ever more-sophisticated scientific innovation. We also find a corollary, “consumption fallacy”—that exposures to chemicals can be prevented through altered consumer habits (e.g., buying fragrance-free rather than scented cleaning products) or through a self-imposed “inverted quarantine” to isolate themselves from perceived toxic threats (Szasz 2007
). The fallacy here is that consumer choice is unbounded, when the range of options consumers have to reduce exposure to chemicals like phthalates or flame retardants is limited. Often chemical additives or residues in consumer products are unlabeled and unregulated, making it hard to identify products to avoid. Economic constraints pose an additional barrier to exposure reduction, since many environmentally preferable products are not financially accessible.
Even when exposure reduction strategies are available, a subset of study participants learned that these have limited effectiveness. For example, prior to enrollment in the HES, one woman eliminated all pesticide use in her garden and regularly consumed organically grown foods. She was surprised to learn pesticides were in her urine despite these efforts. Given the lifestyle changes she made to reduce exposure, the results disheartened her:
Researcher: Can you recall some of the first impressions that you had when you opened that letter and started …?
Participant: Well it was certainly overwhelming. It was overwhelming to know how many chemicals they found in my house, especially like I've already said, I've made really conscious efforts to eliminate so many things [pesticides]—my lawn, everything on the food that I eat. I have a water filtration system that cost me a thousand dollars to, you know, to purify my water. I've made so many, many little things like that … and to know that even so many years after my diagnosis, to know that I'm still being exposed. It's overwhelming.
Several participants who had their homes sampled twice recounted a similar experience. After receiving their first results, five participants reported making incremental changes. Several reduced use of household pesticides or purchased fragrance-free detergents. Another removed old furniture and carpets that were suspected to be harboring chemicals of concern. These participants expected to see these changes reflected in their new results, though their results changed very little.
Notably, participants who experienced their exposures remaining constant despite lifestyle changes reported a desire to get involved in regional environmental health advocacy. Though we do not have enough data to explore this relationship fully, this pattern suggests that a visible failure of individual actions may mobilize individuals toward collective action.
More generally, however, we noted the extent to which participants attempt to “control” personal exposures by other means. Social scientists have observed that when physical mitigation strategies are not possible or fail to reduce a perceived threat, many people instead seek to reduce threats symbolically (Vyner 1989
). A variant on this theme, for some, is controlling one's perception
of chemical risks. Some participants constructed symbolic boundaries around their social worlds, shoring up their homes and bodies against the chemicals thought to be lingering in the outside environment. These symbolic boundaries—whether physical or cognitive—separate person from pollutant. For instance, one participant noted that the pesticides sprayed outside her condominium were unrelated to the pesticides found in her home and urine samples:
I did have some residual pesticides in my urine, and that surprised me because … whence might it have come? How long does it stay in your body? It's kind of a puzzle … I know that there is a company that comes around maybe once or twice a year as needed to take care of insect invasion around the base of the whole building. We're on a level up…. So I have no pesticides here at all, never have. [Later, she noted, though her condo association used a lawn service], I don't walk over the grass … I walk on the walkways.
Three other participants noted how such boundaries shielded them from potential exposures:
Well, I don't know if I thought that you would find anything in my house. I didn't really think that. And the funny thing is, and I, well maybe I wasn't a perfect student for the research. I spend half a year here and half a year in Connecticut. So, you could say I only have half a year of contaminants if you want to.
You know, I can see why a lot of the sprays, of why they asked about how many sprays I use, which I don't use too many. Considering what you see on TV, in the ads you know, I don't begin to buy those things…. And, I don't use hairspray; the hairdresser does that. So, I don't use that. I'm trying to think of what other things … But, there are so many you see on TV that I just don't use.
I do have a cedar chest … and I keep a lot of sweaters that I don't use, and scarves, old scarves and hats and stuff, they just stay in there, and I've got some moth balls in there, but it's closed with a lamp on it, and it doesn't … it isn't in a room that's used. Upstairs. And mothballs are the only thing that I can think of that I do have in here, and they're probably disintegrated because I haven't put any in, in years …
Participants' Socio-emotional Responses
When participants recounted their initial experience of reading the results, they typically reported (and we observed) a measured, pragmatic response to the information. Most participants found their results curious or puzzling, but rarely alarming. Their responses differed from earlier case study descriptions of encounters with uncertain chemical hazards (Edelstein 2004
). Apprehension was not a prevailing response, as typified in the following excerpt:
Participant: There was nothing here [in the data] that was a death sentence.
Researcher: Are you glad to have learned the results of the chemicals in your Home?
Participant: Well, like I said, they weren't earth shattering.
Researcher: Right. So … [probing further]
Participant: They didn't find anything, you know, bad.
There were a few notable exceptions; three participants described or displayed emotional reactions that more closely approximated responses to acute chemical disasters described by earlier social science research. For example, one participant reported her fear of “getting cancer” and living in a “polluted house.”
Besides the lack of negative emotional responses, we observed an intriguing discrepancy between participants' recounting of their initial reaction, and the flurry of questions during the interview. For many women, the research encounter unraveled their earlier conclusions and revealed a set of underlying assumptions about chemical exposures. Many came to realize that the study challenged their understanding of the “toxics problem.” For example, one woman, who initially reported that her results did not indicate cause for concern, offered this comment at the close of her interview:
So, because now I'm doing this with you, this interview, maybe I think that would encourage me to look a little bit further now. Not be so complacent, with okay, gee, you did okay. So, you can write that off … It's just that it seems to make sense to take it another step.
The Significance of Participants' Eco-social History
Although we did not ask participants about their views on environmental pollution, they readily volunteered this information, typically by describing local or regional pollution sources. They reported being aware that they lived in a region with elevated rates of breast cancer, several sources of air and groundwater pollution, and a fragile ecosystem. The majority cited contamination problems on the Cape, especially a local military base and Superfund site, two power plants, one nuclear powered, and an extensive history of pesticide application to cranberry bogs, wetlands, and golf courses. Similarly, participants recounted numerous contamination events outside the region, for example at Love Canal (New York) and in Woburn (Massachusetts), which made national headlines and, in the case of Woburn, was recreated in A Civil Action
; Touchstone Pictures 1998
). Over half of the participants referenced regulated or banned substances more readily than they recalled or spoke about the other classes of chemicals in the study, which have only recently entered public debate (e.g., parabens, phthalates, flame retardants). We wonder whether this has to do with an increased familiarity with banned substances, which became part of popular discourse when regulatory scrutiny attracted public attention. Though few compounds have been banned by the United States, participants remember these substances, especially if they recall using them. Although many contemporary uses of household products and chemicals were un
memorable, several participants recalled DDT stored in the garage, and another described applying chlordane around the foundation of her home.
These memorable “chemical encounters,” and what participants learned about exposures from them, guided the assumptions and expectations they used to interpret study results. People invoked these experiences to interpret levels of chemicals reported in their homes and bodies, and to identify probable exposure sources and appropriate responses. When participants considered pollutant sources, they often looked outside the home. For the Cape Cod participants, the primary context drew upon a collective experience of community contamination of soil, air, and groundwater from activities at the Massachusetts Military Reservation, where contamination of drinking water supplies resulted in regulatory action (EPA 2000
). These events contributed to an assumption that toxic contamination occurs through concentrated military or industrial activities, accidents, or dumping, not everyday use of household products. These experiences influenced problem definition about the build-up of chemicals in intimate interior spaces (e.g., homes and bodies), channeling participants' concerns towards large-scale contamination and away from everyday exposures that accumulate over time.
Finally, participants recounted substances that were banned and removed from the market for household use (e.g., TRIS flame retardants in children's sleepwear), instances where the government did act. It remains unclear whether and how these notable instances of regulatory action led participants to expect stronger regulatory oversight of household products, even though historically this is not the case.
However, prior toxic encounters, in interaction with their experience of learning exposure results, led study participants to re-examine previously held assumptions about when and how humans are exposed to chemicals and what courses of action are most likely to reduce exposure. This emergent state of understanding constitutes a salient feature of participants' exposure experience. In the discussion, we consider the theoretical, scientific, and policy implications of these findings.