SIDEBAR: The Lessons of Long Island

• Part One: Cause & Controversy
• Part Two: A Plague of Neglect
• Sidebars: Risk Factors; Toxic Links; Long Island
• Printable: Download the magazine-style PDF

Founded at the behest of Congress in 1993, the Long Island Breast Cancer Study Project (nih.gov) was intended to deliver the definitive statement on environmental contaminants and high breast cancer rates — exactly the sort of thing being demanded now in the Bay Area.

The study grew to encompass 10 projects (nih.gov), adding up to more than $26 million in special grants and various local and federal agencies.

Missing links

“I think this process will ultimately disclose the environmental links to cancer,” said Karen Joy Miller, founder and president of Long Island’s 4,000-member Huntington Breast Cancer Action Coalition.

She already has her suspicions that it will prove to be “many things in combination, what we drink and what we breathe, things we use for our manicured lawns, our pesticides, our household cleaners … We are doing it to ourselves.”

But with researchers nearing the end of their work, the early buzz suggests that few, if any, clear links between toxins and cancer have been found.

Some prominent breast cancer patient advocates worry this could even do some harm if results are misinterpreted.

“The concern about Long Island is there’s a lot that’s being left out,” said Barbara Brenner of the San Francisco-based nonprofit Breast Cancer Action, like studies of pollutants that mimic hormones and the timing of toxic exposures during a woman’s life.

“When this study is finally released, and it’s more than a year delayed already, if it shows nothing, as many expect, or very little, then it may lead us to conclude that people should stop screaming about this. That would be wrong,” she said.

Brenner is convinced environmental factors must account for a good deal of the roughly 50 to 70 percent of cancer cases that cannot be explained by genetic and other “so-called known risk factors,” such as a woman’s reproductive history.

Fatal flaws

Dr. Janette D. Sherman, a New York physician and author of the new book Life’s Delicate Balance: Causes and Prevention of Breast Cancer, maintains that the Long Island study might have provided the definitive answers people are demanding, but has been undermined by financial support from research institutions tied to polluting industries and pharmaceutical companies.

The result, she writes, is that the studies have potentially fatal technical flaws, particularly in how groups of women were selected as control subjects, which will inevitably produce findings that discount the role of environmental toxins.

While these assertions are subject to dispute, the question of whether science can always be trusted has recently come up at the highest levels of the medical establishment.

Dr. Marcia Angell, editor of the prestigious New England Journal of Medicine, recently blasted the financial dealings of researchers in an editorial headlined, “Is Academic Medicine For Sale?” (nejm.org/).

“When the boundaries between industry and academic medicine become as blurred as they are now, the business goals of industry influence the mission of medical schools in multiple ways,” she wrote.

Viewed from the trenches of the breast cancer movement, that came as long overdue confirmation that accusations of financial conflicts must be taken seriously.

‘Reason to trust’

“These are not conspiracy theorists,” Brenner said. “We’re watching the privatization of what used to be a public health agenda.”

Patient advocates argue that there is no choice but to keep on searching for environmental links, despite the expense and the risk of running afoul of commercial interests. They say that since there are no immediate solutions to the 30 to 50 percent of breast cancer cases attributable to known risk factors, studies should focus on the unknown 50 to 70 percent.

In Marin, researchers are hoping to follow Long Island’s example of ambitious research, with county health director Nancy Rubin ensuring the research process is one that women feel they can trust.

That means involving the community at every step, Miller said, recalling all-day meetings where scientists, activists and health workers all went over research tactics in precise detail, winding up with a consensus to guide the work.

“Some very important things have taken place in the last five years,” Miller said. “We opened the door between the community and the researchers. That’s the most valuable thing that has happened. There’s now a connection between the real world and the world of the scientists that wasn’t there before.”

–Carl Hall