Multi-Million Dollar Study "Inconclusive by Design"
Lanie Melamed, Ph.D.
Since its inception, BCAM has deepened its commitment to the idea that "primary prevention" (stopping cancer before it starts) is key to understanding rising cancer rates worldwide. It seemed logical that the more than 100,000 man-made chemicals introduced into our environment since World War II might help explain the origin of our cancers.¹
Newspaper headlines inform us daily that connections exist between ill health and chemicals in our air, water, food and consumer products. We read that: toxic leaks are at 'astronomical levels' in the St. Lawrence River²; that farm women are nine times more likely to develop breast cancer³; and that radioactive waste in scrap yards are a risk to the public4. The evidence is mounting that it may well be the environment itself that is giving us cancer. [For those who search beyond the headlines, there are convincing arguments in books by Janette Sherman, Susan Steingraber, Samuel Epstein, and Devra Lee Davis, all familiar names to BCAM members.5]
Yet none of these provides the "absolute proof" required by science in order to redress environmental standards or to effect changes in public policy. Hunches, precautionary approaches, high incidence rates, 'mounting evidence' and 'marginal' research seem to have little or no impact. Studies that set out to establish a relationship between environmental contaminants and cancer are seldom undertaken, in part because they provide little status for researchers and are reluctantly funded. Governments, business and industry are loth to make damaging information public. The cigarette companies lobbied for decades to conceal the truth about the effects of smoking. More recently, Moyers exposed collusion on the part of pharmaceutical companies to conceal evidence about the harmful effects of some of their products.6 The current controversy around the Kyoto Protocol is another indication of the powerful forces resisting change.
The Long Island Cancer Study Project (LICSP) was a multi-million dollar government- sponsored research study. Many of us hoped that the results would affirm our premonitions and set us off on the long road to change. It had its beginnings in the 1980's when a group of women on Long Island became concerned about the high rates of cancer in their communities — over 30 percent higher than the estimated average for Nassau County. The women lobbied their legislators to approve an $800,000 study that was conducted by the New York State Health Department. The report, issued in 1988, concluded that lifestyle choices — having children late in life or not at all, eating a high-fat diet, taking high-dose birth control pills, etc. — caused cancer. In other words, the women themselves were to blame.
Outraged, the women organized and, over a ten-year period — during which there was an increase in national public awareness about the rising rates of cancer — a powerful grassroots organization. was formed. The movement took on momentum when a Republican senator came on board and promised to deliver a comprehensive study. Eight years in process (1993 — 2001), and $30 million later, the LICSP failed to respond to their questions and, more seriously, squelched the public's hope for concrete answers.
What went wrong? The story is complex, much like a "whodunit." Key players were the women activists, politicians (local and federal) and researchers who were involved in a number of independent but parallel projects. The women made strong demands to be included in the design and to be consulted in every step along the way. They skilfully lobbied the politicians who, for their part, saw this as "motherhood and apple pie" — a sure way to win friends and votes.
But the hoped-for answers never came. Ultimately the findings failed to show any connection between breast cancer and the five chemicals studied. It also found a minimum correlation between cancer rates and exposure to other pollutants, such as car exhaust and cigarette smoke. Many reasons have been found to explain the disappointing and unanticipated results.
- Activists and the politicians insisted that the project be conducted locally, employing local researchers. Methodological disagreements surfaced early. The case study method was chosen over a longitudinal approach. (Longitudinal studies are always far more difficult and expensive than case studies.) As it turned out, the case study method was not the best for the job. A more accurate method would have conducted a wide-ranging study to define the extent of environmental and occupational exposures that might influence breast cancer rates.
- This was followed by disagreement about how to choose the sample population. Since all participants had to be from Long Island, the control group (women whountil then were cancer-free), were culled from the same community instead of from a comparable but "untainted" geographical area. Many women in the designated control group refused to participate in the study.
- Factions developed within the women's organization and dissension surfaced among federal and state politicians who frequently worked against each other, vying for political visibility and voter support. This mixture of science, activism and politics was ultimately a prescription for failure.
- Critical to the outcome was the selection of the agency that would be awarded the lucrative research agenda. Bypassing respected federal research centres, it was assigned to the National Cancer Institute (NCI), an institution known to have friends in industry. According to Fagin, this froze out centres that would have been more supportive of pollution-oriented research.7 At the NCI,there were few, if any, persons with a knowledge of toxicology.8
- Of the several research arms that made up the LICSP, the largest had a price tag of $8 million and involved 3,000 women. The epidemiologist selected as principle investigator later became the focus of criticism and dissatisfaction.
- Traditionally, epidemiology identifies and tracks the causes of infectious diseases but is less effective when dealing with non-infectious diseases such as cancer. According to Judy Brady, choosing an epidemiologist to do an environmental study is "... like trying to travel to the moon in an airplane." Also, she adds, the failure to find connections between chemical exposures and disease may be more harmful than doing nothing, since polluters can use this as a rationale for doing nothing.9 Because twenty or more years may elapse between a cancer-causing event and the detection of a tumour, epidemiologists would have to map environmental conditions in effect two decades earlier. Imagine trying to find reliable data on the condition of drinking water or air pollution in the early 70's, for a particular family that may have moved several times!
- It was expected that the research would focus on a range of chemicals used in insecticides, plastics, cosmetics and other consumer products. Instead, the researchers restricted it to the pesticides DDT, dieldrin and chlordane, as well as PCBs and PAHs (polycyclic aromatic hydrocarbons — found in car exhaust, cigarette smoke and charcoal-broiled foods). All five are easily measurable in blood and urine. Interactive and/or multiplier effects were not studied. All but PAH had already been banned in the U.S.A. Could it be that this would minimize the potential for industrial liability if chemical-cancer links were found?
- There were other problems — difficulties in developing an adequate computer mapping system, the failure to survey old maps for the existence of contaminated "hot spots" (pesticides, dump sites, or radiation sites), information secrecy imposed by the NCI over the eight-year period, and the refusal of peer-reviewed journals to publish the results. Also criticized was the procedure adopted to collect and store soil samples from the women's backyards (in plastic bags known to leak carcinogens) and the decision not to measure residues in the women's body fat where carcinogens are deposited.
- Most telling was the omission of environmental radiation as a possible cause of the cancers. Long Island is home to the Brookhaven National Laboratory (designated as a super-fund site because of its radioactive and chemical emissions), and is downwind from nuclear power reactors in New York, New Jersey and Connecticut. The word 'radiation' was never mentioned in the study or in subsequent media coverage.
Studies show that the cancer rates of women living within 100 miles of a nuclear reactor, or downwind from one, are among the highest in the world.10 According to Janette Sherman, the women on Long Island "have been exposed to more than 200 radioactive chemicals emitted during routine operation, including strontium 90, cesium 137 and iodine 131, all demonstrated carcinogens."11 Why was this issue not raised in the eight years that the study was underway?
This omission leads one to ponder the political implications of the results of the Long Island Study. Did politicians and researchers really want to find out what was causing cancer? If they had, would business and industry have been willing to become more environmentally responsible? Or would this cost too much, result in the loss of too many jobs, compromise competition and threaten shareholder profits? In the words of one journalist, It's pretty clear. We're firing blanks in this 'war against breast cancer.' While industries release toxic chemicals, unsafe drugs and radiation, they also fund government agencies and large non-profits who provide effective 'cover' for their devastating activities.12 Many cancer activists regret a missed opportunity to accomplish something significant, but believe the outcome was intended. One might say the study was "inconclusive by design."
Should we be discouraged? Yes and no. There is clearly a lot to be learned from the mistakes made in this undertaking: more and better-designed studies are clearly required. We may never be able to scientifically prove the connections between various cancers and toxic substances during our lifetimes. The task is enormous and complex. Given the right wing backlash of the day, political will is clearly lacking.
Yet despite "inconclusive" findings, we can continue to push for public policies that reduce or eliminate the use of potential toxins. We have to continue to believe in our hunches, and to assemble the pieces of the puzzle for ourselves. Most importantly, we can work toward worldwide acceptance of the Precautionary Principle (see page __ in this newsletter) and commit ourselves to making responsible lifestyle choices, both for ourselves and for this precious planet we are borrowing from our children.
- Greenpeace Magazine, Fall 2002
- The Montreal Gazette, 4/27/02
- International Journal of Occupational & Environmental Health, cited in The Globe and Mail, 11/22/02
- The Montreal Gazette, 4/23/02
- Listed in order, Life's Delicate Balance — Causes and Prevention of Breast Cancer, Living Downstream — An Ecologist Looks At Cancer and the Environment, The Breast Cancer Prevention Book and When Smoke Ran like Water — Tales of Environmental Deception and the Battle Against Pollution. All four books are in the BCAM library.
- Bill Moyers, "Trade Secrets", PBS Television, March 26, 2002
- Dan Fagin, "Tattered Hopes", Newsday, 11/3/02
- Janette Sherman, M.D., e-mail correspondence, 11/20/02
- Judy Brady, "Stopping Cancer Before it Starts." Women's Cancer Resource Center News, Oakland, Ca., Fall 2002
- The Montreal Gazette, 10/25/99
- Janette Sherman, letter to the NY Times, August 14, 2002
- Lynn Landes, Pharmaceuticals, Pesticides, and Radiation Cause Breast Cancer ... While Wealthy Non-Profits and Feds Protect Industry, www.commondreams.org 10/23/02