Danley at htUardolls·waste site in Lo~n/1, Mass.: .4 ntw brttd ofprivt~u dnective

How to Track Down Toxins F or years, Norine Danley thought that

she was just unlucky. Living on a quiet dead-end street in Lowell, Mass., she suf· fered two miscarriages and lost another

by soon after birth. Her blood wouldn't t properly; her son and daughter seemed be always sick. "We wanted to believe

that it was all a coincidence," she says. But in 1980 she and her neighbors began to suspect that the abandoned dump near their houses contained chemicals that might be making them ill. "We tried to convince the state that it was a problem," says Danley, 32. "But they said that we were overreact· ing." When the state refused to survey the bealtb problems of those wbo lived near the dump, Danley and neighbor Phyllis Robey forged ahead with an epidemiological study of their own. Although neither woman bad any ICientific training, they mobilized the community, sent volunteers door-to-door with health questionnaires and found an apparently high rate of illness. Now, three years after their study was finished, cleanup oftbe dump is slowly beginning.

Danley and the community organizers of Lowell are part of a growing number of ordinary citizens who, frustrated by thegov­ernment's failure to investigate the efl'ects of dangerous chemicals in their soil, air or water, are conducting health studies of their own. In San Jose, Calif., for example, housewife Lorraine Ross-whose youngest daughter was born with heart defects-doc· umented an alarming incidence of miscar­riages and birth defects among residents wbosewaterhadbeencontaminatedbyleak· · g underground chemical-storage tanks in 981 and '82. The state basnow taken action

to prevent more leaks. In Willow Springs, La., in 1983, Peggy Frankland discovered skin rashes and other ailments among those

who lived near a hazardous-waste dump, helping to get thedumppartiallyshutdown.

These intrepid amateur scientists­dubbed "barefoot epidemiologists" after the "barefoot doctors" who brought rudi­mentary medicine to China in the 1960s­bave been forced into the front line of the battle against toxic waste. Thousands of waste dumps across the country contain enough dangerous chemicals to pose threats to human health, and there are thousands ofcases of chemically contaminated drink­ing water. But state and local health agen· cies are usually unable-or unwilling-to search for possible negative efl'ects on health. "Ifhomeowners could pull ofl'these health studies," says University of Texas epidemiologist Marvin Legator, "then we'd have a way of dealing with the problem."

Gibbsand family: I.Assonsfrom Love Canal

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/I/- •Jf.W t £¥- Mli., 6, !~f.f' Conducting a good health survey, bow·

ever, is no easy task. While the results of many private studies are eventually con· firmed by professional epidemiologists, most of the barefoot studies done to date have bad serious shortcomings. Common failings include interviewing too few people, asking the wrong questions, picking an im· proper control group for comparison and discounting tbe bias that inevitably creeps in when people report their own ailments. After a neighborhood group from Utica, Mich., brought a huge box ofsurvey forms and a list ofillnesses to the Michigan Toxic Substances Control Commission two and a half years ago, says commission director Larry Holcomb, "we bad to tell them that tbe study didn't have much value."

Adiaa: Yet the Utica survey did spur action-on two fronts. State inspectors vis­ited the site of an abandoned chemical­waste incinerator in the town and found enough contamination to get it on the Envi­ronmental Protection Agency's Superfund list.AndHolcomb'sagencybeganworkona manual, "Citizen's Guide for Community

'ilealth Studies," to prevent other worried homeowners from producing flawed sur· veys. The guide, which will be available in twomonths, "tells people how toactually do a survey on their own," explains Holcomb.

Even !llOre ambitious is the "Health De­tective's Handbook," to be published in July by The Johns Hopkins University Press. Edited by Legator and two colleagues at the University ofTexas Medical Branch in Gal­veston, the book leads would-be barefoot scientists all the way through a health study, •. from building a community organization to statistical analysis of collected data. Along the way it provides a 25-page sample ques· tionnaire, tips on handling the media and government agencies, and exhaustive refer­ences. "The book grew from the frustration of not knowing what to tell the hundreds of people whocalled us for help," says Legator. "A lot of epidemiologists will say that it is equivalent to practicing medicine without a license. But epidemiology is a labor-inten· sive science. And one thing that is available in most of these areas is intelligent house­wives with telephones."

Help is also available from the Citizen's Clearinghousefor Hazardous Wastes, in Ar· lington, Va. Founded in 1981 by Lois Marie Gibbs, the housewife whose efl'orts helped etch Love Canal in the national conscious­ness, the clearinghouse is now working with more than 600 local groups. But amateur epidemiologists should be forewarned: bealthsurveysaremerelytheopeningsalvos of drawn-out battles. Fortunately, the very act of performing a study usually creates a community organization strong enough to fight to the bitter end. In Lowell, for exam­ple, Norine Danley's group was able to hound Gov. Edward King until he coughed up cleanup funds for the toxic-waste site. The lesson, it seems, is to go barefoot-and then make as much noise as possible.

JOHN CAREY wilh SUSAN KATZ

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