The industries that had contributed to the air, water, and soil contamination in the White Lake area had operated principally between the 1950s and 1990s. In the winter of 2008-2009, residents of the White Lake area had become concerned about news reports and personal awareness of young people being diagnosed with – and some dying from – cancer.

ATSDR Report, December 2008

In December 2008, the Agency for Toxic Substances and Disease Registry (ATSDR) released a report that culminated a multi-year study that had been intended to “define the threat to human health from critical pollutants found in the Great Lakes region” (p. ix).

This task was more complex than expected, as described in the Executive Summary of the 2008 ATSDR Final Report. The ATSDR ultimately concluded that current data did not allow them to “draw firm conclusions about the threat to human health from critical pollutants across the Great Lakes region” (p. vi). In Appendix 3, the report addressed its limitations, including the “dearth of health data for many adverse effects potentially associated with low-level, environmental contaminants” (p. 3-1).

The ATSDR had changed the name of the report from “Public Health Implications of Hazardous Substances in the Twenty-Six Great Lakes Areas of Concern” ( the name of the 2007 Draft), to “ATSDR Studies in Chemical Releases in the Great Lakes Region” (the name of the 2008 Final Report). The removal of “public health implications of hazardous substances” in the title left us feeling as though it was going to be up to us, as ordinary citizens, to look into the cancer concerns in our community.

Did the industrial pollution that landed White Lake on the map as a Great Lakes Areas of Concern in 1987 contribute to the perceived high number of cancers noted by residents in the White Lake area two decades later? Citizens wanted to know. We concluded that if there was a “dearth of health data,” as was mentioned in the ATSDR report, we would need to try to collect our own data.

The Executive Summary of the ATSDR report goes on to propose a list of promising recommendations, including data collection, modeling of exposure pathways, biomonitoring, development of linkages of health and environment data, performance of analytical epidemiology studies, and appropriate public health action (p. xi-xii). But we saw the ATSDR’s proposed actions as occurring far into the future, and we were at a loss as to how we might discover the causes of our cancers currently being diagnosed unless we attempted to explore this ourselves.

ATSDR Preliminary Health Assessments

The ATSDR has been conducting public health assessments since the 1980s. ATSDR Preliminary Health Assessments were conducted in March 1989 for two industries that had been located in Montague: Hooker Chemical & Plastics Corp., which had shut down in 1982, and E.I. DuPont de Nemours and Co., Inc., which continued its operations until 1996. ATSDR health assessments describe the hazardous conditions and chemicals present at the sites, as well as the demographics of the area and the potential for human exposures. They propose recommendations for further testing, monitoring, and cleanup of the sites, and then state whether human health is at risk and whether follow-up health studies are recommended.

The DuPont report concludes:

“…the DuPont site has been evaluated for appropriate follow-up with respect to health effect studies. Although there are indications that human exposure to on-site/off-site contaminants has previously occurred, this site is not being considered for follow-up studies at this time because documented exposures were few and considered of short-term duration.”

The Hooker report concludes:

“…the Hooker Chemical & Plastics Corp site has been evaluated for appropriate follow-up with respect to health effect studies. Although there are indications that human exposure to on-site/off-site contaminants has previously occurred, this site is not being considered for follow-up health studies at this time because the size of the population likely exposed to significant contaminant levels was inadequate to allow statistically valid conclusions for the study.”

In reviewing other ATSDR health assessments, I began to understand that their purpose was to estimate the risks associated with exposure to the toxics that were known to be present in a community rather than to examine the actual health outcomes of the people that had been exposed. While the reports in general gather descriptions of soil, water, air, and food chain contamination levels, they do not seek to gather health records or anecdotes nor address what health conditions may be caused by contaminants.

Controversy Surrounding the Release of the 2008 ATSDR Report

In its Reports Overview, the ATSDR summarizes the controversy that occurred in 2008:

“In 2001, the International Joint Commission requested ATSDR’s ‘assistance in evaluating the public health implications of environmental contamination in Great Lakes Areas of Concern (AOCs) by providing information on ATSDR’s public health assessments of hazardous waste sites within these AOCs.’… ATSDR staff identified and assembled certain existing data related to both environmental pollutants and health, and they distributed a draft report for peer review in 2004. Between April 2004 and July 2007, the draft report underwent revision. An in-process draft of this report became public in 2007 before ATSDR had finished reviewing and finalizing it. Accordingly, ATSDR delayed release of the report and set about correcting deficiencies identified by multiple levels of Agency scientific staff as well as by reviewers and stakeholders as a 2008 draft.”

As I interpret the news coverage at the time, the controversy was that while the ATSDR was delaying release of the final report pending review from independent researchers, a copy of the report had been leaked to the press and was published. Some health data were missing from the 2008 draft. Congressional representatives wanted to know whether the ATSDR had withheld health data that might raise public fears that pollution was causing health problems.

Several independent reviewers (including a major report, Review of ATSDR’s Great Lakes Report, by the Institutes of Medicine of the National Academies) commented on deficiencies in the report and questioned the overall scientific soundness of the report, which they said was a compilation of existing documents without analysis:

“…in the absence of further analysis or integration of this information it does not add substantially to scientific understanding of contamination in the AOCs or Great Lakes region or of the potential health effects of such contamination” [National Academies of Sciences, Engineering, and Medicine. 2008].

The ATSDR’s own assessment of the limitations of this report speak to some of the points I will try to make in this cancer project report: that if we want to know whether people are getting sick (including cancer) from a pollution source, we need to study the area in the vicinity of the source, rather than use existing county data. Here’s what the ATSDR had to say on this topic:

“Data that are routinely collected (such as information on cancer and birth defects) are not well matched to exposure data in time or by location and therefore cannot help to assess whether the identified environmental exposures have adverse health consequences” [Executive Summary, 2008 ATSDR Report].

“Since county-wide data are used to ascertain health outcomes, a dilution or underestimation of effects may result since it includes residents that are not among those most highly exposed. The U.S. AOCs may be located across more than one county or be confined within a much localized area in a county. In these instances, the county data may not be totally representative of the population residing in proximity to the site” [Introduction, 2007 ATSDR Report].

Decision to Launch this Project, 2009

In February 2009, Polly Schlaff, a 34-year-old widow of one of the young men that had died of cancer, started a Facebook Group called “Cancer in White Lake.” Hundreds of people joined the group, sharing their concerns about their own cancers or the cancers of their friends and relatives. One member said, “I’m so glad someone is finally doing something about this.” We said, “We aren’t, but maybe we should.”

We consulted with a White Lake area environmentalist, as well as the epidemiologist, an environmental specialist, and a mapping specialist at Public Health – Muskegon County.

We searched online and read about investigations that had been done in other communities, including the Huntington Breast Cancer Action Coalition (HBCAC).

During the next three months, we weighed whether or not we should take on this project. But then we learned of additional young adults from our town that had been diagnosed with cancer.

We said, “If we look into this, we might learn something. If we don’t look into this, we most certainly won’t learn anything.” We jumped into this effort with both feet, unaware of the rewards and the obstacles that lay ahead.

Our epidemiologist from Public Health – Muskegon County, Dr. Jean Chang, kindly listened to our concerns and said, “Make a list.” We formed a Health Committee to do the work of determining our criteria for inclusion, developing our survey, and reaching out to the community to invite their participation in the project.