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When it comes to the ethics of healthresearch, “there’s been a presumptionthat ethicists and ethics committeeswi l l be in charge and so lve e thica lproblems,” says Ann Cook, director ofthe National Rural Bioethics Project atthe University of Montana in Missoula.More and more, however, environmen-tal health researchers are realizing theirneed to be direct ly involved in theethics questions facing them and theircommunity partners.

Cook describes ethics as “somethingthat everyone in the community has astake in and needs to know about.” TheNIEHS and th e Na t i ona l HumanGenome Research Institute agree. In2002 the two institutes launched a grantsprogram called Partnerships to AddressEthical Challenges in EnvironmentalHealth, which aims to tackle these issuesby promoting community–researcher col-laborations.

As part of the larger NIEHS Envi-ronmental Justice Program framework,the Partnerships program seeks to reme-dy the unequal burden borne by socioe-conomically disadvantaged persons interms of residential exposure to greater-than-acceptable levels of environmentalpollution, occupational exposure to haz-ardous substances, and fewer civic bene-fits such as sewage and water treatment.Chief among ethical concerns for suchpopulations is ensuring that researchstudies are designed and conducted withthe involvement of those being studiedrather than regarding them simply asstudy subjects.

Program grantees, including Cook’steam, receive up to $200,000 annuallyfor five years to investigate environmentalills in a community, survey residents’attitudes about both local environmentalproblems and health studies in general,and develop educational campaigns tomeet local needs. Grantee teams mustinclude an environmental health scien-tist, a social scientist or expert on issuessuch as racial, ethnic, or socioeconomicdiscrimination, and a representative froma local community organization thatworks on environmental issues.

A variety of groups, from environ-mental organizations to schools of publichealth, receive funding through thePartnerships program. Grantees are nowhalfway through their projects and readyto discuss some of their findings—andfrustrations.

Defining“Community” In an effort todevelop a series ofmodels for carry-ing out effectivecommunity reviewof environmentalhealth research,Peggy Shephard, executive director ofWest Harlem Environmental Action (WEACT) in New York City, and her col-leagues have been listening in on NIHpanel discussions between researchers andtheir community partners. Shephard’steam has also conducted a series of inter-views and focus groups with environmen-tal health researchers and their long-termcommunity partners about the workingsof such relationships.

One of WE ACT’s preliminary find-ings is that “we need to stop using theword ‘community,’” says Shephard. Theword is repeated so often and in so manycontexts that it’s becoming meaningless,she says. In part because “community” hasno clear definition among researchers,“we’re coming to the viewpoint that thereis never real ‘community consent’ forresearch,” she says. For example, she asks,is consent achieved when one communitygroup okays a health study, or only whenrepresentatives of multiple communitygroups endorse it? WE ACT is addressingthese and other questions—including howto appropriately define “community”—inan upcoming report.

Ensuring SavvyStudyParticipants R e s e a r c h e r s a tBoston Universityhave rounded upfour potent i a l l ydivergent groups—publ ic hea l th of f ic ia l s , communityactivists, community residents, and repre-sentatives of academe—with the goal ofcoming to some common understandingof what is involved when scientists embarkon a community health study. The team isled by David Ozonoff, an environmentalepidemiologist at the Boston UniversitySchool of Public Health.

What motivated the project, explainsproject manager and Ozonoff graduatestudent Madeleine Scammell, is the manycalls to university and state health depart-ments across the country from residents

concerned about a variety of potentialhealth hazards in their towns. Callers oftenrequest a health study, yet when studies aredone, communities are often unhappy withthe results because of vastly differing expec-tations about what a health study provides,says Ozonoff. For example, researchers,perhaps preoccupied with the problem ofstatistical power for small populations, areoften stricter than a lay person mightexpect as to what constitutes positive evi-dence of an environmental health problem.

At focus groups and during interviewsthat Ozonoff’s team conducted, residentsoften reported that it’s tangible evidence ofpollution (such as soot on the cars) ratherthan media coverage that motivates themto take action, says Scammell. Communitymembers are also more concerned thanresearchers may appreciate about researchpolitics, such as why their town was select-ed as a study site.

Teasing OutInteractionsA 200-mile stretcho f N e w Y o r k ’ sHudson River hasachieved the dubi-ous distinction ofbeing one of thecountry’s largest Superfund sites. Staff atthe W. Haywood Burns EnvironmentalEducation Center in Albany, where theHudson and other polluted waterways con-verge, are investigating what this distinc-tion means for residents of Albany’s poorestneighborhoods.

Led by principal investigator DonnaPerry, a registered nurse at the BurnsCenter, the team and their community part-ners interviewed residents in 80 primarilyAfrican American households to get baselineinformation on respondents’ health andenvironment. They found that half of therespondents were smokers. Many had beenphysically assaulted and reported frequentlyhearing gunshots near their homes. Thesmell of gasoline, sewage, and exhaust alsowas common near their homes. Almost44% of respondents had breathing prob-lems. Perry and her colleagues are nowdetermining whether the exposure to envi-ronmental pollutants in combination withsmoking, emotional stress, heredity,lifestyle, and even community zoning deci-sions may create significant health hazards.

The team is developing health andenvironmental education materials that areculturally sensitive to the Albany residentsthey serve. Recommendations for conduct-ing environmental health surveys in urbancommunities and communities of color areforthcoming, says Perry.

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Countering a ToxicTalismanD o w n r i v e r f r o mAlbany, Hal Strelnick,a physician at Monte-fiore Medical Centerin the Bronx, leads theSouth Bronx Environ-mental Justice Partnership. He and his col-leagues are focusing some of their ethicsgrant dollars on an unusual problem withmercury: members of various religiousgroups believe that spreading this toxicantaround their homes will bring good luck andward off evil, explains Strelnick.

The ethical challenge of establishing rap-port and trust with these groups is compli-cated; when the New York City Departmentof Health banned the sale of elemental mer-cury at the folk pharmacies serving some ofthese groups, adherents became reluctant todiscuss the practice with outsiders. “Wewanted to determine if there was a moreproductive and respectful and ethical way [toeducate about mercury],” Strelnick says.

South Bronx residents are not “aware ofmercury as an environmental problem untoitself, though they are highly aware of lead,and they understand when you explain thatmercury acts like lead in the body,” saysStrelnick. The team is partnering with com-munity religious leaders to develop a proto-col for educating the public, without panick-ing them, about the dangers of the ritual useof toxic substances. They are also workingon a more general public information cam-paign on how residents can assess andaddress community environmental issues.

Building Trustand CommunityCapacity forResearchIf you ask represen-tatives of communi-ty organizations inan area neighboringa prestigious med-ical school about environmental health andcommunity–researcher relations, you’d bet-ter be prepared for a landslide of ideas onhow to build effective partnerships. That’swhat Mark Farfel, a public health researcherat the Johns Hopkins Bloomberg School ofPublic Health in Baltimore, Maryland, andcolleagues discovered when their Environ-mental Justice Partnership sought feedbackabout how to improve the research process.

The partnership uses a participatorymodel and comprises staff and faculty at theBloomberg School of Public Health, 11 dif-ferent East Baltimore organizations, andfaculty and students from the MarylandInstitute College of Art.

Focus group participants spoke aboutthe poor state of their community’s environ-ment and described negative experiencesduring research studies, including lack ofcommunication from researchers conductingstudies and lack of community involvement.Participants were not entirely negative, how-ever. They agreed that research can be bene-ficial if the community is involved up front,if the findings are shared with participantsand the community at large, and if commu-nity–researcher partnerships work to sustainneeded programs and policies.

The partnership has followed up by writ-ing grants with board organizations, holdinga community fair, and designing educationalprograms for residents about issues such aslead poisoning. The community board isalso working with the Bloomberg School ofPublic Health to ensure that research in EastBaltimore is mutually beneficial.

PuttingEnvironmentalResearch onStageCommunities inNorth Carolinaface environmen-tal contamina-tion from multi-ple sources, from hog slaughterhouses towood-laminating industries. CarolynCrump, a public health scientist at theUniversity of North Carolina at ChapelHill, and her community colleagues areusing theater, along with more traditionaleducational materials, to open discussionon how health research affects the peoplewho live near pollution hot spots. Theteam is writing and piloting scripts in thestyle of Reader’s Theater, in which per-formers read from a script rather than actout memorized parts. They are also devel-oping facilitator guides that will identifykey points for discussion following theperformances.

The theater pieces may be performedat community centers, schools, churches,government or other professional offices,conferences, and workshops. The perfor-mances are meant to encourage perform-ers and audience members to talk about,among other topics, their understandingof the role of research in identifying envi-ronmental hazards, says Crump.

The performances will also documentthe stories of communities fighting forenvironmental justice and the experiencesof attorneys and researchers who work onenvironmental health issues. “Cross-disci-plinary exchange is one of the main[intended] outcomes of our project,”Crump says.

Mining theCommunityGoodwillCook’ s t eam inMontana is work-ing with residentsin Libby, a miningtown in the uppernorthwest corner of the state. A vermiculitemine that operated in Libby from 1921 to1990 exposed workers, their families, andthe local environment to dangerous levels oftoxic amphibole asbestos. “When you aredealing with Superfund kind of issues, com-munities can get fractured, so we are usinginformation and ethics to bring peopletogether,” says Cook.

Earlier health studies have shown thatscientists, health care providers, andLibby residents alike need more informa-tion on many issues related to asbestos,including the health risks and health careoptions. To meet that need, Cook’s teamis offering a website (http://www.umt.edu/Libbyhealth/) where visitors can readfacts that dispel myths about asbestos,download learning activities, and readsummaries written in lay language of thelegal and scientific issues involved in theLibby case.

The team is also field-testing materialdesigned to help people with asbestos-related disease and other community mem-bers understand what a research project is.“In places such as Libby, where there is lotsof research going on, you need to clarifywhat it means to participate in a researchproject,” says Cook.

To reach out to younger members ofthe community, the group is developingmaterials on asbestos and the history of thecommunity for use in local schools.“Schools didn’t discuss [the asbestos prob-lem] with students because it was perceivedas a hard topic to talk about,” Cook says.

TrainingInternationalBioethicists The need for betterpartnerships betweencommunities andresearchers is in noway unique to theUnited States. TheNIEHS also cosponsors, along with severalother NIH institutes, projects that addressinequities in developing countries.

Developing countries present uniquebioethical challenges, says bioethicistRuth Macklin of the Albert EinsteinCollege of Medicine in the Bronx. Forone thing, in countries where many par-ticipants are illiterate, written informed

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consent documents are inappropriate. Inaddition, she says, the lack of well-trainedinstitutional review boards makes inde-pendent ethical review almost impossible.There is also pointed debate about whetherforeign investigators need to provide carethat is better than or equivalent to whatthe study participants would normallyreceive in their country.

To address such issues, Macklin andher colleagues provide seven months ofbioethics training every year in BuenosAires to four Latin American professionalsand scholars with experience in studiesinvolving human subjects or researchethics. The training is funded by the JohnE. Fogarty International Center’s Inter-national Bioethics Education and CareerDevelopment Awards program, whichgives foreign and domestic universities upto $250,000 annually to support interna-tional bioethics education for professionalsfrom low- and middle-income countries.

Under the guidance of Macklin andher colleagues, participants take courses inbioethics, attend meetings of differentresearch ethics committees, and prepare adetailed plan for implementing activities inresearch ethics at their home institutions.

Macklin’s recent graduates “are almostwithout exception engaged in ongoingresearch or program development inbioethics,” she says.

A Group EffortWhen academic and community groupswork together, whether in the UnitedStates or abroad, collaborators and partici-pants need to address their long-heldassumptions about science, communities,and poverty, ethics grantees say. For exam-ple, says Farfel, some African Americans arewary of researchers and their studies in thewake of the infamous Tuskegee SyphilisStudy conducted from 1932 to 1972, dur-ing which the Public Health Servicedenied treatment to almost 400 poorAfrican American men who had the dis-ease. Episodes like that lead many would-be study participants to view research assomething done to them, not for them,Farfel says.

Nevertheless, residents are increasinglyreceptive to this approach of bringing ethicsand community participation into allaspects of environmental health research.“Receptive, yes,” says Cook. “And cau-tious.” –Tina Adler

Symposium ExploresChildren’sEnvironments“When we try to pick out anything byitself, we find it hitched to everything elsein the Universe.” Quoting naturalist JohnMuir, Michael Fischer, an environmentalconsultant formerly of the William andFlora Hewlett Foundation, introduced the2004 Biennial Scientific Symposium onChildren’s Health as Impacted by Environ-mental Contaminants by emphasizing that

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Schwartz NamedNew NIEHS/NTP DirectorOn 25 October 2004 NIH director Elias Zerhouni announced the appointment of David Schwartzas the new director of the NIEHS and the National Toxicology Program. Schwartz, who willassume his new duties on 4 April 2005, is currently director of the Pulmonary, Allergy, andCritical Care Division and vice chair of research in the Department of Medicine at DukeUniversity. While at Duke, Schwartz has also played a leading role in developing interdisciplinaryCenters in Environmental Health Sciences, Environmental Genomics, and Environmental Asthma.Schwartz’s research has focused on the genetic and biological determinants of environmentallung disease and host defense.

Schwartz is filling the position left open by Kenneth Olden, who stepped down from thepost late in 2003, but who agreed to remain in the position until his successor was named. Oldenwill stay on at the NIEHS as a researcher in the intramural program.

At the announcement of the appointment, DHHS secretary Tommy Thompson called Schwartz “one of the nation’s outstandingresearchers in environmental health.” Thompson and Zerhouni acknowledged the leadership role that Schwartz is taking on at theNIEHS as environmental factors are being implicated more often in the etiology of disease. Zerhouni touted Schwartz’s interdisciplinaryapproach as one that “will help lead us to well-conceived strategies for preventing, diagnosing, and treating disease.”

As director of the NIEHS, Schwartz will oversee a $711 million budget that funds multidisciplinary biomedical research programs, aswell as prevention and intervention efforts that encompass training, education, technology transfer, and community outreach. TheNIEHS currently supports more than 850 research grants.

“I am delighted and honored to join NIH,” said Schwartz. “My vision for NIEHS is to improve human health by supporting integrat-ed research and career development in environmental sciences, environmental medicine, and environmental public health. Given recentadvances in biomedical research and computational biology, NIEHS is well positioned to use its expertise in toxicology to understandhuman biology, disease pathogenesis, and the unique distribution of disease in different populations.”

NIEHS News

children are at the nexus of many of theconnections found in nature.

The symposium was designed toexplore the interconnectedness of all ele-ments of the environments in which chil-dren live, learn, and play, as well as ways toprevent environmental health risks. Hostedby the Children’s Environmental HealthInstitute (CEHI), the symposium was held24–25 September 2004 at the McKinneyRoughs Nature Park in Austin, Texas. Thesymposium was sponsored by the NIEHS,Physicians for Social Responsibility, theTexas Medical Association, the LowerColorado River Authority, and the Centersfor Disease Control and Prevention. Theinterdisciplinary group of participantsincluded researchers, pediatricians andother health professionals, social workers,nonprofit and advocacy group representa-tives, architects, and engineers.

Topics ranged from the cellular level tothe global. Because environmental toxicantsare ubiquitous in air, water, food, and med-ications, said pediatrician and speakerMartin Lorin, we have seen a global rise inenvironmentally related diseases. However,in terms of the extent of the effects of expo-sures, he contended, we are seeing only thetip of the iceberg.

Participants agreed that to reduceharmful immediate and long-term effects ofcontaminants on children, we must studythe interactions of environment, genes,developmental stage, and behavior.Discussions on endocrine disruptors (byJohn McLachlan of Tulane and XavierUniversities), developmental defects (byRichard Finnell of Texas A&M Univer-sity), and respiratory disease (by SharonPetronella of The University of TexasMedical Branch, Galveston), for example,addressed not just specific immediatehealth problems in children but also futuretrends: What kinds of adult diseases mightbe projected from fetal and childhoodexposures? And how healthy are futurepopulations likely to be?

Potential remedies for environmentallyrelated health problems may be as simple astaking folic acid to help prevent birthdefects or having a physician take an envi-ronmental history to spot potential healthrisks. Technical (air quality samplers, hand-held immunosensors, microarrays) anddemographic (geographic information sys-tems, longitudinal studies) tools also canhelp identify and alleviate environmentalhealth threats.

The built environment—both materialsand design—can significantly reduce chil-dren’s exposures to toxicants while creatingsafe and stimulating places to grow andlearn. How do we replace the persistent

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Headliners Respiratory HealthNIEHS-Supported Research

Air Pollution Impairs Lung Development in Children

Gauderman WJ, Avol E, Gilliland F, Vora H, Thomas D, Berhane K, McConnell R,Kuenzli N, Lurmann F, Rappaport E, Margolis H, Bates D, Peters J. 2004. The effect ofair pollution on lung development from 10 to 18 years of age. N Engl J Med351(11):1057–1067.

Mounting evidence suggests that exposure to air pollution has long-termeffects on lung development in children; reductions in lung function havebeen observed in studies in Europe and the United States. To further inves-tigate these effects, this NIEHS-supported research team performed aprospective epidemiologic study on 1,759 children from 12 communities inSouthern California.

The communities had a wide range of exposures to air pollutantsincluding particulate matter, acid aerosols, ozone, and nitrogen dioxide.The team recruited fourth-graders and performed lung function testsannually for eight years.

Over the eight-year period, decreases in a measurement of lung func-tion known as forced expiratory volume (FEV1) were associated with expo-sure to nitrogen dioxide, acid aerosols, particulate matter, and elementalcarbon. The decreases noted were statistically and clinically significant. Forexample, the risk of diminished FEV1 was almost five times higher at thehighest level of particulate matter exposure than at the lowest level. Themagnitude of the effects on development of lung function was compara-ble to that reported for exposure to maternal smoking.

The authors conclude that these results can be generalized to childrenliving in other parts of the United States that have high air pollution levels.The results indicate that current ambient air pollution levels can havechronic and adverse effects on lung development in children, leading toclinically significant lung function deficits in adulthood. Given the severityof the effects and the importance of lung development as a determinantof morbidity and mortality during adulthood, it is important to continueidentifying strategies for reducing air pollution. –Jerry Phelps

bioaccumulative and toxic chemicals usedto produce building materials with less-toxic alternatives?

Gail Vittori, codirector of the Centerfor Maximum Potential Building Sys-tems, suggested several methods, amongthem eliminating interior finish materialsthat offgas volatile organic compounds,using recycled fly ash as a substitute forconcrete, labeling building products morethoroughly, and using paints certified bythe independent Green Seal standardsprogram.

Vittori also recommended that buil-ders participate in the Leadership inEnergy and Environmental Design pro-gram, a voluntary standard established bythe U.S. Green Building Council forassessing and certifying high-performancesustainable buildings. In schools, inade-quate ventilation, use of toxic pesticidesand cleaners, offgassing from buildingmaterials and furnishings, and poor main-tenance should be remediated to avoidincreases in asthma, allergies, and otherrespiratory diseases.

With an eye toward the future, theNIEHS and the U.S. EnvironmentalProtection Agency will continue to fundthe Centers for Children’s EnvironmentalHealth and Disease Prevention Research,according to NIEHS director KennethOlden. These centers promote multidisci-plinary research and the translation andapplication of research to public healthand clinical practice. The Centers forDisease Control and Prevention aims toexpand environmental public health track-ing to a full nationwide network, collect-ing and analyzing data on hazards, expo-sures, and health effects. And FernandoGuerra, director of health with the SanAntonio Metropolitan Health District,noted that the multi-agency NationalChildren’s Study “will provide for the firsttime an opportunity for children and fam-ilies to benefit from the cumulative evi-dence that will be assembled over twenty-five years, to better understand causal rela-tionships from many different influences,including the environment.”

The participants concluded that pre-vention, remediation, and attention tothe long term are essential to addressingthe unique vulnerabilities of infants andchildren. The challenge presented here isto blend research and clinical work withadvocacy. Said CEHI director JanieFields: “Together we are building astructure that bridges the health infor-mation gap between the medical ,research, and environmental communities.”–Martha M. Dimes

Help Insteadof HypeBreast cancer strikes 1 in 7 Americanwomen, making it the most commonlydiagnosed cancer among women in theUnited States. Although certain genetic fac-tors can play a part in the etiology of thedisease, scientists are studying other impor-tant factors including estrogen-related fac-tors, lifestyle choices, and environmentalrisk. Understanding these factors can helpwomen make in-formed decisionsabout their healthand avoid beinganother breast can-cer statistic.

Researchers atthe NIEHS-fund-e d C e n t e r f o rE n v i r o n m e n t a lHealth and Sus-ceptibility, housedin the Universityof North Carolinaat Chapel HillSchool of PublicHealth, are leadingthe way in deter-mining both thegenetic and othercauses of breastcancer. And thecenter ’ s Community Outreach andEducation Program (COEP), headed byFrances M. Lynn, a professor of environ-mental sciences and engineering, has devel-oped a workshop program to spread theword to North Carolina residents that theyneed not be helpless victims of this disease.

To assist in developing the workshop,the COEP partnered with the BreastCancer Coalition of North Carolina, anonprofit organization that advocates onbehalf of those with breast cancer and theirfamilies. A scientific advisory board repre-senting a variety of medical disciplinesreviewed the workshop materials and con-tinues to work with COEP staff to answerparticipants’ questions and keep the work-shop as current as possible.

Visitors to the center’s website candownload the workshop materials at http://www.sph.unc.edu/cehs/outreach/elsi.htm.Vis i tors can download the 15-s l idePowerPoint presentation that is used in theworkshop, as well as an agenda, facilitatorinstructions, case studies, fact sheets, andtake-home activities.

The presentation introduces the work-shop audience to the known possible risk

factors for breast cancer, as well as somerisk-reduction measures women can take.The presentation divides risk factors intofour groups: personal or estrogen-relatedrisk, lifestyle risk, environmental risk, andgenetic or inherited risk.

The environmental risk portion of thepresentation explains gene–environmentinteractions that occur as a result of expo-

sure to toxicants and howthat differs from risk asso-ciated with inheriting oneof the so-called breastcancer genes (BRCA1 orBRCA2 ) . Despi te thefrightening prospect ofbreast cancer running infamilies, only 5–10% ofbreast cancer cases arethought to be genetic inorigin. Slides describeinstances where thisinherited risk may beimplicated in breast can-cer. Participants also learnabout the ethical, legal,and social implications ofgenetic testing—how thetesting is done, how theyshould decide if they needit, and what may happen

if they test positive.The interactive portion of the work-

shop includes fun learning activities, suchas Reduce Breast Cancer Bingo, which hasbeen a hit with the senior citizens that havetaken part in the program to date.Participants win when they correctly iden-tify four risk-reduction facts in a row,including the importance of exercising, eat-ing vegetables, and limiting exposure tosecondhand smoke. A related activity pre-sents participants with fictional case studiesfor three women, one with a family historyof breast cancer, one with lifestyle risk fac-tors, and one with environmental risk fac-tors. Participants are asked to identify boththe risk factors and any protective factorseach women has, and to recommend howeach woman might reduce her risk.

The workshop, which has been con-ducted across North Carolina, has beendeveloped so that women who have com-pleted it know not only how to better carefor themselves but also how to advise otherwomen. In conducting the workshops,COEP staff hope to dispel some of themyths women have about breast cancer andinstill optimism instead. –Erin E. Dooley

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