Goodness-of-Fit Ethics for Multicultural Research

1Goodness-of-Fit Ethicsfor Multicultural Research

CELIA B. FISHER

KATHLEEN RAGSDALE

All medical and public-health researchers would like a magic bullet that wouldmake research undeniably ethical. But there is no magic bullet. There is only thecomplex and difficult process of linking research in resource-poor settings to theservices demanded by poor people.

—Paul Farmer, “Can Transnational ResearchBe Ethical in the Developing World?”

In this chapter, we discuss the dynamicnature of ethnic minority status and theunique challenges and opportunities this

concept presents for scientists engaged in theethical practice of research. Next, we discussgoodness-of-fit ethics (GFE) as a model forethics-in-science decision making (Fisher,2004). We then discuss the concept ofco-learning and its role in the process ofdeveloping GFE, using case studies to illus-trate particular points. We close with a dis-cussion of “doing good well” as a conceptthat involves reframing traditional powerdynamics associated with behavioral sciencein such a way that individual participants,their communities, and researchers areactively involved in a dynamic process of

mutual accommodation that also meets therequirements of the scientific process.

THE DYNAMICNATURE OF ETHNICITYAND MINORITY STATUS

Ethnicity as a research variable is a dynamicconstruct continuously challenged, expanded,and revised within an ever changing socio-political landscape. This fluid definitionalenvironment requires cultural and ethicalcompetence to ensure the responsible conductof research with ethnic minority populationsin the United States and abroad. Ethnic minor-ity populations are challenging venues within

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which to conduct research for reasons includ-ing historical and contemporary stigmatiza-tion, cultural attitudes regarding individualautonomy and communal responsibility,within-group cultural variation, immigra-tion history, language, acculturation-relatedissues, and multiethnic heritage (Fisher,Jackson, & Villarruel, 1997). Such chal-lenges highlight the question, “What is eth-nicity?” In this chapter we define ethnicity asa collective identity based on the shared cul-tural heritage of a social group. Typicalmarkers of ethnicity, which vary acrossgroups, include dress, language, foodways,religious and traditional practices, commonancestry, and/or geographic origin (Ragsdale,2004). We draw an important distinctionbetween the concept of ethnicity and theconcept of race, in that race is not a scientificconstruct but a social construct used toclassify individuals based on phenotypicvariation (Fisher et al., 1997; Gould, 1981).We also draw a distinction between ethnicstatus and minority status. Whereas minoritystatus is often conferred on a subordinated ormarginalized social group by the dominantculture, ethnic status is a claim made by aparticular collective body to a designatedsocial identity (Eller, 1999; Ragsdale, 2004).In the next section, we draw on examplesfrom the United States in order to illustratethe fluidity of ethnicity and minority status.

Contemporary Prejudiceand Changing Demographicsin the United States

Members of minority and ethnically mar-ginalized populations experience multipleincidents of actual and perceived discrimina-tion on an individual level from peers andon an institutional level from health careproviders, educators, shopkeepers, socialservice providers, educators, police and secu-rity personnel, and others (Chun, 1995;

Demo & Hughes, 1990; Essed, 1991; Fisher,Wallace, & Fenton, 2000; Gaertner &Dovidio, 1986). The contemporary experi-ence of institutionalized discrimination withinthe United States is deeply embedded withinthe historical groundwork of European con-quest. Long before the United States existedas such, it was a multiethnic society. Indivi-dual members of indigenous populations con-quered by Spanish, French, and Englishcolonizers were assimilated into the dominantculture with varying “success,” often throughinstitutions such as slavery, the church, inter-marriage, and educational systems. Later,enslaved peoples of African descent were con-scripted as field labor for agricultural exports.Still later, poverty-stricken foreign nationals(such as Asian workers imported to buildthe transatlantic rail system) were allowedinto the United States as a form of cheaplabor during the industrial revolution. By theend of the 20th century, the experience oftransnational integration had acceleratedwith the expansion of the global economy,communication technologies, and transporta-tion. In the contemporary United States, eco-nomic migrants from Mexico and otherCentral American countries perform the man-ual labor that many U.S. nationals will not. Inaddition, political refugees from around theworld are granted asylum in the UnitedStates, and lotteries allow other foreignnationals to immigrate to the country.

Although members of diverse ethnicgroups may have shared experiences withhistorical and contemporary racism, groupsmay experience discrimination differently.This can be traced back to earlier U.S. polit-ical and social policies regarding peoplesof non-European ethnicity, as well as issuesof resistance and accommodation to domi-nant U.S. culture (Dublin, 1996; Gould,1981; Ragsdale, 2004). For example, Cubansarrived en masse to the United States aspolitical refugees beginning in the early

FOUNDATIONS OF ETHNOCULTURAL RESEARCH AND RESEARCH ETHICS4


1960s. Those Cubans who settled in Miami,Florida, developed an enclave communitythat wields considerable political and eco-nomic dominance in Miami-Dade County(Portes & Stepick, 1993). In contrast,Haitians who arrived en masse to the UnitedStates as political refugees in the early 1980shave continued to experience social, eco-nomic, and political marginalization inMiami (Stepick & Foner, 1998; Stepick,Grenier, Castro, & Dunn, 2003). The diver-gence in discrimination experienced acrossethnic groups can often be attributed toracial/ethnic stereotyping, which can be bothpositive and negative. For example, a high-status African national who has recentlymigrated to the United States may be con-fronted with racial/ethnic prejudice—andan accompanying loss of social status—based solely on ascribed characteristicsthat members of the dominant culture asso-ciate with his or her skin tone. The Africannational’s first experiences with racial dis-crimination in the United States may be acause of intense culture shock, especially ifthis experience was previously unknown tothe person (see Mathabane, 1990; Ogbaa,2003). Publicized threats to members ofone’s cultural group can also result in per-sonal anxiety. The racial profiling thatresulted in the 1999 police slaying ofAmadou Diallo, an unarmed Guinean immi-grant, exemplified the distal effects of institu-tional racism (Diallo, 2003). On the otherhand, the generally positive stereotyping ofAsians immigrants within the United Stateshas been associated with academic achieve-ment among some Asian youth in the U.S.educational system (Lowe, 1996).

Other factors that can mediate differentialexperiences of discrimination include charac-teristics unique to a particular ethnic enclave,such as internalized cultural attitudes that shapebeliefs, decision making, and behavior (Ogbaa,2003; Ragsdale, 2004). Despite the divergence

in discrimination that ethnic groups oftenexperience, they also may share many uniquesimilarities as minority populations operatingwithin a dominant society. These can includeissues related to acculturation, assimilation,immigration status, and stigmatization thatresult in discrimination in housing, banking,educational opportunities, and health dis-parities (Fisher et al., 1997). Another factorthat may increase the complexity of under-standing how and why various ethnic groupsexperience marginalization differentially isthat second- and third-generation ethnicminority members often have quite differ-ent experiences associated with languageacquisition, cultural assimilation, and socialadjustment to dominant U.S. culture than dofirst-generation immigrants.

GOODNESS-OF-FIT ETHICS(GFE) AND CO-LEARNING

Fisher has called for investigators toapproach research ethics with vulnerablepopulations within an ethics frameworkthat conceptualizes participant respect andprotections in terms of the goodness-of-fitamong the specific research context and theunique characteristics of the participantpopulation (Fisher, 2003a, 2003b; Fisher &Masty, in press). Conceptualizing researchrisks and benefits as a product of both experi-mental design and participant attributesshifts judgments regarding ethical proce-dures away from an exclusive focus onassumed participant vulnerabilities to (a) anexamination of those aspects of the researchsetting that are creating or exacerbatingresearch vulnerability and (b) considerationof how the design and ethical procedurescan be modified to best advance science andparticipant and social welfare.

The GFE framework is especially impor-tant in addressing institutional and scientific

Goodness-of-Fit Ethics for Multicultural Research 5


biases that often single out ethnic minoritypopulations as posing “unique” and “diffi-cult” ethical challenges, which can onlybe resolved by bending ethical require-ments. For example, a situation of placingthe burden of vulnerability on the participantpopulation rather than the investigativeprocedures can emerge when developmentalscientists argue that IRBs should permitwaiver of parental permission for lower-income minority populations because of theexpected low permission rates. These requestsare often based on the erroneous assumptionthat such populations are uncaring or lackthe education to understand the value of theresearch (Fisher et al., 1997). The reality isthat ethnic minority parents often refuseto permit their children to participate inresearch because they distrust the motives ofthe researchers, do not believe the researchgoals will benefit their communities, are fear-ful that the research will further stigmatizetheir children, or are concerned that confi-dentiality breaches will lead to unnecessarygovernment intrusion (Fisher, 2002, 2004;Fisher & Wallace, 2000).

Correcting Ethnic Biasand Misperceptions

The GFE framework for research withethnic minority populations presents anopportunity to correct biases and mispercep-tions. The GFE model, like the multiculturalcompetence model (Sue et al., 1998), assumesthat adequate ethical decision makingrequires more than slight modifications totraditional ways of conducting science. Itrequires critical reflection about potentialmodifications in research goals and design,which can enhance scientific validity, partici-pant protections, and social value. In orderto apply the GFE model to studies involvingwaiver of parental permission, for example,the developmental scientist would be requiredto explore (a) which aspects of the research

aims, designs, or recruitment procedures are“misfitted” to the values, fears, and hopes ofthe specific ethnic parent population and(b) how the design, aims, or recruitmentprocedures could be modified to produce astudy that fit the requirements of population-sensitive science as well as methodologicallysound science.

Research vulnerability as a relational con-cept. In the GFE model, research vulnerabil-ity is reduced when research procedures arefitted to participant characteristics (Fisher2003a, 2003b, in press). In order to accom-plish this, at the inception stage of researchprotocols, investigators should ask them-selves the following questions: (a) What arethe special life circumstances that renderparticipants more susceptible to researchrisk? (b) Which aspects of the researchdesign, implementation, or disseminationmay create or exacerbate research risk? and(c) How can research and ethical proce-dures be fitted to participant characteristicsto reduce vulnerability? (Fisher, 2003b;Fisher & Masty, in press)

When research involves ethnic minoritypopulations, life circumstances that increaseparticipants’ research vulnerability can includea combination of demographic characteris-tics such as language, education, minorityand immigration status, disparities in healthand health care opportunities, socioeconomicstatus, cultural assumptions about genderroles and attitudes toward authority, ethnicidentity, and racial mistrust. In addition, othersocial or health risks may be layered on top ofethnic/cultural life circumstances, such asaddiction, comorbid mental health disorders,illegal behavior, health risks (includingdiagnosed and undiagnosed conditions),social stigma, and membership in a violentsocial network. In order to establish theboundaries of GFE, such variables must begiven careful consideration in toto ratherthan on a piecemeal basis.



GFE AND THE SCIENCEESTABLISHMENT

The traditional science establishment hasendorsed a set of values by which investiga-tors and the public can evaluate the responsi-ble conduct of research. When embodied infederal regulations and professional codes ofconduct, these largely Eurocentric, rational-deductive, libertarian conceptions of the good(Prilleltensky, 1997) become moral premisesthat resist cultural challenges (Fisher, 1999).Chief among these is the utilitarian philoso-phy that the morally right action is the onethat produces the most pleasing conse-quences (Mill, 1861/1957). Applied to ethics-in-science decision making, when a conflictbetween scientific rigor and participant wel-fare arises, the investigator’s obligation to asmall group of research participants may besuperseded by her or his responsibility to pro-duce reliable data that can potentially providefuture benefits to members of society at largeor to the participants’ particular social group.Utilitarianism thus encourages a value struc-ture in which potential benefits of science tosociety can receive higher moral priority thanconcrete and measurable risks to researchparticipants.

Drawing on established works on researchethics (Beauchamp, Faden, Wallace, &Walters, 1982; Freedman, 1975; Rosenwald,1996; Veatch, 1987), Fisher (1999) identifieda set of unchallenged assumptions based ontraditional views of science:

• Knowledge gathering is a fundamental andunconditional good.

• Knowledge generated by the scientificmethod is and should be value free.

• Scientists are entitled to use humans asmaterial for their pursuits.

• Respect, beneficence, and justice are guid-ing moral principles for ethical decisionmaking in human subjects research.

• Cost-benefit analysis is an acceptable basisfor deciding how to prioritize these moral

principles and for guiding ethical decisionmaking.

• Informed consent is the primary means ofensuring participants are not victims of animbalance in favor of greater risks thanbenefits.

• The right to make autonomous decisionsregarding research participation is depen-dent on the ability to weigh the risks andbenefits of the experimental procedures.

• Principles of beneficence and justice can besubordinated to the principle of autonomyreflected in informed consent policies.

• The absence of harm justifies the absence ofbenefits if it leads to scientifically validinformation.

• Science-in-ethics decision making isthe province of those with professionalauthority, be it scientists, bioethicists,IRB members, or policy makers (Fisher,1999, p. 36).

Challenging TraditionalScientific Assumptions

Investigator contact with the constantlyshifting demographic landscape of the UnitedStates and the increasingly influential voiceof ethnic minority scholars and participantcommunities is creating a sea change intraditional scientific value assumptions. Asexemplified by the contributions to this vol-ume, social and behavioral scientists increas-ingly acknowledge that the pursuit ofknowledge is neither as personally value-freenor unaffected by external forces (such as thepriorities of funders) as previous generationsof scientists often assumed (see also Altman,1995). The important gains that have beenmade within ethics-in-science decision mak-ing confirm that the reevaluation of the costsand benefits of conducting research is anongoing process. For example, although cost-effectiveness and cost-benefit analyses havemerit in particular public health arenas(Haddix, Teutsch, & Corso, 2002), theirapplication is controversial when scholars



and practitioners adopt an ultrautilitarianand noncontextualized stance (MacQueen,2004; Pinkerton, Johnson, Masotti, Derse, &Layde, 2002).

The GFE model moves multiculturalethics further by posing several interrelatedquestions about these value premises (Fisher,1999; Greenfield, 1994; Markus & Kitayama,1991; Parham, 1993; Triandis, 1990): (a) Dothe values embodied in current professionalcodes and federal regulations reflect themoral visions of different ethnoculturalgroups recruited for research participation?(b) Do scientists and participant groups havedifferent conceptions of research risks andbenefits? and (c) Is the value placed on thecontrol and manipulation of variables com-patible with the values, collectivity, and har-mony characteristic of many ethnoculturalpopulations?

To ensure the responsible conduct ofresearch, these questions require that investi-gators give careful consideration to thedifferent cultural lenses through which theyand research participants view the ethics ofresearch involving ethnic minority popula-tions. Indeed, one of the important gains inmulticultural research ethics is the movementtoward incorporating participant perspec-tives in the evaluation of research risks andpotential benefits (Cassell, 1982; Fisher,2002, 2004; Fisher & Wallace, 2000;Melton, Levine, Koocher, Rosenthal, &Thompson, 1998). Co-learning is the GFEprocess through which participant perspec-tives are incorporated into the identificationof ethical issues and construction of ethicalprocedures (Fisher, 1999, 2002).

Co-Learning: The Processof Goodness-of-Fit Ethics

The GFE model views scientist andparticipant alike as moral agents joined inpartnership to construct ethical proceduresthat contribute to research designs reflecting

social value and scientific validity as wellas the principles of justice and care (Fisher,1997, 1999, 2000). The GFE process ofco-learning assumes that ethical decisionmaking is deficient when it occurs in theabsence of discourse illuminating the culturallens through which the participant popula-tion views the research. Co-learning isgrounded in the principle of respect. Itassumes that both investigator and partici-pant populations come to the research enter-prise as experts: The investigator bringsexpertise about the scientific method and theextant empirical knowledge base, andprospective participants and their commu-nity representatives bring expertise about thefears and hopes toward, and value that theyplace on, the prospective research (Fisher,1999, 2000).

Investigators can use co-learning proce-dures to share with prospective participantstheir views on how and why it is importantto apply the scientific method to examinequestions of societal import and to debatesunderlying areas of current ethical concern.In turn, the prospective participants, theirfamilies, and community representatives canapply their moral perspectives to critiquethe scientific and social value of a proposedstudy and share with investigators the valueorientations guiding participant and com-munity reactions to the planned procedures(Fisher, 1999, 2000; Fisher & Wallace,2000). When co-learning is soundly groundedand correctly implemented within a moralframework of respect, ethical proceduresemerge that reflect a mutual accommodationto the values of science and the values of thecultural community in which the science willbe conducted.

Similar in many ways to the principlesunderlying participatory research (Mac-Queen, 2004; Nichter, 1984; Weeks,Schensul, Williams, Singer, & Grier, 1995),in the GFE process of co-learning, to be astakeholder does not assume that scientists



and participants share equally in the riskand benefits of research or that they share thesame rights, status, and privileges. Forexample, investigators often have the benefitof more social capital than do participantsin terms of education, wealth, and accessto power and opportunities (Fisher, 1999,2000). As stakeholders in a research proto-col, however, investigators are dependent onresearch communities to fulfill recruitmentgoals and produce empirically valid knowl-edge of social value. Although research par-ticipants and the communities to which theybelong may benefit from study participation,the nature of conducting research is such thatthe benefits that accrue to participants canrarely be measured using the same yardstickas that used to measure the benefits thataccrue to investigators. Participant stake-holders may receive increased incomethrough participant incentives, benefit fromreceiving current knowledge about thestrengths or vulnerabilities of their popula-tion motivating the research, or increasetheir understanding of research methods(and thereby increase their ability to be betterinformed consumers of scientific reports aswell as community advocates).

The experience of co-learning and mutualaccommodation between investigators andparticipants as process for developing GFEis essential in multicultural research. Ratherthan compromise, co-learning is a dialecticthat creates something new from stakehold-ers’ participation in a relational process.Co-learning provides the essential knowledgebase from which investigators can identifyresearch methods and ethical procedures thatfit the needs and values of the participantpopulation. Even as scientists have a respon-sibility to produce research grounded withinaccepted scientific practice, they are alsorequired—and ethically compelled—to pro-tect participant autonomy and confidential-ity. As a dialectic process, co-learning callsfor the development of ethical procedures

that facilitate and build on mutual accom-modation in order to accomplish these goals.For example, when engaged in researchamong vulnerable populations of diverse cul-tural background, investigators must recog-nize that social norms regarding deference toauthority often vary across ethnicity, genera-tion, socioeconomic status, and assimilationstatus (Fisher, in press; Fisher & Masty, inpress; Kodish et al., 2004). Additionally, par-ticipants from multicultural backgroundsoften must cope with language barriers, lackof experience in regard to asserting theirrights within a clinical setting, and the per-ception that the delivery of future health careservices is contingent on their research par-ticipation (Fisher et al., 2002; Fisher &Masty, in press).

In the sections that follow, we describea series of ethical challenges and solutionsthat exemplify the value of goodness-of-fitco-learning with minority and vulnerablepopulations in a resource-poor nation.

ETHNOCULTURAL RESEARCHETHICS IN THE DEVELOPINGWORLD: TOURISM AND SEXWORK IN BELIZE

Much of GFE has dealt with studiesconducted in the United States, yet proactiveengagement in GFE is equally crucial whensocial and behavioral scientists from devel-oped countries conduct international researchin less developed and/or resource-poornations (Benatar & Singer, 2000; Farmer,1999, 2002). When international researchinvolves official buy-in, approval, coopera-tion, or collaboration with national and localgovernmental agencies in host countries,consideration of the goodness-of-fit betweenWestern research ethical practices and partic-ipant characteristics may require increasedattention. Just as when scientists conductstudies in domestic settings, international



researchers must be alert to the possibilitythat study findings may be used by govern-mental agencies to justify the implementationof social policies that further marginalizevulnerable populations. When conductingresearch among participants in developingcountries, the “potentially exploitativenature of research” (Benatar & Singer, 2000,p. 825) should be given careful considerationby investigators. In light of this caveat, thefollowing examples are meant as illustrativerather than exhaustive. The examples arederived from concerns raised during a studyconducted by Kathleen Ragsdale (the study’sprincipal investigator [PI] and second authorof this chapter) and Jessica Anders in Belize,Central America (Ragsdale & Anders, 1998;Ragsdale & Anders, 1999).

Cultural and EconomicContext of Sex Work in Belize

Formerly known as British Hondurasuntil it gained independence in 1981, Belizeis a small multicultural and multiethnic coun-try wedged between Mexico and Guatemala,yet has the longest barrier reef in the WesternHemisphere. Like many Caribbean and Cen-tral American countries faced with catas-trophic economic restructuring and falteringagriculture and manufacturing export indus-tries (Safa, 1995), Belizean national develop-ment strategies have focused on tourism as away to pump dollars into its cash-poor econ-omy (Mahler & Wotkyns, 1993; SPEAR,1993). Although tourism can bring in neededforeign currency to developing nations, itoften differentially affects men and womendue to the fact that “experiences with pro-cesses of economic growth, commercializa-tion, and market expansion are determinedby both gender and class” (Sen & Grown,1987, p. 25; see also Levy & Lerch, 1991;McClaurin, 1996). Women working in thetourism sector often have fewer economicoptions than men. Economic opportunity for

many poor women is restricted to low-skilledjobs in the tourism industry, such as domes-tic service or street vending (Richter, 1995).As is often the case in many Caribbean andCentral American countries, the growth oftourism in Belize has also increased women’sinvolvement in sex work as a way to meettheir basic economic needs (Kane, 1993;Kempadoo, 1999; Ragsdale & Anders,1999). Although Belizean law does not pro-hibit sex work, it is illegal to operate abrothel in the country (U.S. Department ofState, 2002); however, enforcement of thislaw is practically nonexistent. For example,one of the most well known brothels in theBelize City area operates openly on the mainhighway that connects the city and the inter-national airport.

To investigate the nature and scope of sexwork and tourism in Belize, Ragsdale andAnders conducted multimethod research in1998 at three field sites in the followingorder: Belize City, Orange Walk Town, andAmbergris Caye. Due to time and budgetconstraints, the investigators conducted1 month of intensive research at each site togain a rapid assessment of conditions underwhich women engaged in sex work, as well as sex tourism’s embeddedness withinthe tourism sector. The ethical challengesemerging at the three study sites will be usedto illustrate GFE and co-learning as reflec-tive and organic processes. In particular,we will describe ways in which conditionsunique to each site caused the investigatorsto adapt different strategies appropriate foreach site (Bernard, 1995; Fisher, 1999,2002).

Case I. Voice of Community Members:Competing Frameworks in Belize City

There is increased awareness that givingthe community voice is a vital key to GFE inresearch. Yet investigators who are not pre-pared for the reality of how rival discourses



operate in multicultural settings mayunexpectedly find themselves faced withnegotiating the social terrain of competinggroups who, in sincere attempts to amelio-rate disparities, seek to push a particularagenda or claim proprietary rights to data(Fisher et al., 1997). In this section, wedescribe how Ragsdale and Anders arrived inBelize City to begin collecting data on thenature of tourism and the sex trade in Belizeonly to find that both governmental and non-governmental organizations (NGOs) hadparticular agendas that they wanted theinvestigators to address.

Contacting key informants. As Belize City isthe first destination for most tourists enteringthe country of Belize, Ragsdale and Andersbegan their research efforts by visitingvarious governmental agencies located in thecity, including the Department of Women’sAffairs, the Ministry of Health, and theMinistry of Justice. They also visited NGOs,including the Belize Organization forWomen and Development (BOWAND), theBelize Family Life Association (BFLA), repre-sentatives of the Peace Corps, and the Societyfor the Promotion of Education and Research(SPEAR). Key informants from the commu-nity at large who had contact with touristsand/or brothel workers were also contac-ted, including volunteer workers, tourismoperators, bar and club owners, taxi drivers,security guards, and police officers. Govern-mental, NGO, and community sources gaveconflicting advice about the safety of enter-ing brothels to conduct research. Afterweighing these reports, the investigatorsmade plans to visit the most prominentbrothel operating in the Belize City area;however, the wisdom of this decision waschallenged a few days before the plannedvisit when the local newspaper reported thata client at the brothel had shot a securityguard in the face. On receiving this news, thePI cancelled the trip, deciding that it was too

dangerous for the investigators to enter thebrothel.

Cultural stigma. Based on discussions withgovernmental, NGO, and community infor-mants, the investigators confirmed that, asexpected, there was much stigma associatedwith involvement in female sex work. Inparticular, at that time in Belize City therewas a general perception that HIV/AIDSwas a problem only among migrant sexworkers and an associated assumptionthat limited health and research resources—such as represented by the presence of theinvestigators—should be directed towardmore immediate concerns of permanent resi-dents, such as domestic violence. Somewhatunexpectedly, the investigators also foundthat there was stigma attached to femaleinvestigators conducting research related tosex work. Among most key informants inBelize City, the investigation of sex work byfemale researchers was generally perceived asunusual—although in some cases it wasdeemed risqué or aberrant—when measuredagainst traditional gender norms for Belizeanwomen.

Confidentiality. Through discussions withcontacts in the Belize City, the investigatorsalso learned that issues of confidentialityare exacerbated in this small and resource-poor country. For example, Belize has anestimated population of 250,000 (U.S.Department of State, 2002), and thereforethe inhabitants of this small nation generallydistrust claims of truly anonymous testing.The potential for stigmatization associatedwith being HIV-positive inhibits and delaysHIV testing for many Belizeans and non-Belizeans who would otherwise like to knowtheir HIV status. This is especially true formigrant women engaged in sex work in thecountry, for, although sex work is legal,the stigmatizing perception that female sexworkers (FSWs) are carriers of sexually



transmitted infections can deter such womenfrom HIV testing.

Lessons learned. A primary lesson learnedduring this phase of the research is thatinvestigators working in international set-tings must be able to fit not only ethical pro-cedures but the research questions andmethods as in-country conditions dictate.Ragsdale and Anders initially planned tospend approximately 2 weeks in Belize Citymaking contact with key gatekeepers amonggovernmental agencies, NGOs, and commu-nity members in order to gain an overallimpression of the current state of tourismand sex work in Belize. The investigatorsthen planned to travel directly from BelizeCity to the tourist destination of AmbergrisCaye to conduct the primary part of theresearch project; however, during discussionsamong key informants in Belize City, theinvestigators learned that a considerablenumber of brothels operated openly inOrange Walk Town, which was located 66miles from Belize City. According to severalsources, the brothels serviced the local com-munity as well as truck drivers and touristson their way to Mexico. During this process,the investigators also discovered that free-lance sex work (Kempadoo, 2001), com-monly referred to as “streetwalking,” waspractically nonexistent in Belize. Althoughthe investigators heard anecdotal reports of ahandful of discrete escort services frequentedby local businessmen and wealthier tourists,sex work is primarily conducted on brothelpremises.

The multisourced co-learning consulta-tions described above highlighted obstaclesto brothel recruitment and study implemen-tation embodied in community suspicions,intergroup conflict surrounding the goals ofthe research, and stigma associated with theinvestigators’ gender. Ragsdale and Andersspent an extra 2 weeks in unsuccessfulattempts to gain access to brothels in Belize

City. During those 2 weeks, it becameincreasingly clear that the investigatorswould have to sacrifice time spent at anothersite in order to build the community connec-tions necessary to overcome the barriers ofentering Belize City brothels. Yet Ragsdaleand Anders were realistic in their evaluationthat increased rapport building might notguarantee access to any brothel within thevicinity of the city. Therefore, rather than riskspending limited research time on recruit-ment efforts that might not prove productive,the investigators decided to move to a morepromising site of data collection. As men-tioned earlier, Ragsdale and Anders had ini-tially decided that Ambergris Caye would betheir second and final field site; however,after their consultations with key informantsin Belize City, they felt compelled to investi-gate Orange Walk Town’s potential as a fieldsite before traveling on to Ambergris Caye.

Case 2. Vulnerable Populationsand Research Challenges: BrothelSex Workers in Orange Walk Town

The second phase of the pilot study wasconducted among brothel-based FSWs inOrange Walk Town, Belize. The town was ofparticular interest because of Orange Walk’sgeographic location on a major highway thatconnects Belize City to Chetemal, Mexico.This transportation corridor brings long-haul truckers and tourists through the town,which had approximately 10 brothels inoperation at the time of the study. In the fol-lowing example, we use the investigators’experiences to illustrate how they identifiedcircumstances of particular vulnerabilityfor a sample of FSWs voluntarily engaged insexual labor in Orange Walk Town.

Nature of the problem. With the adventof the HIV/AIDS pandemic in the 1980s,much biomedical and behavioral researchthat focused on women involved in sex work



reinforced negative stereotypes by implicatingFSWs in the heterosexual transmission ofHIV while downplaying the role of clientsand domestic partners in unsafe sexual prac-tices (Farmer, 1999; Vanwesenbeeck, 2001).In addition, the focus on HIV transmissionassociated with female sexual labor over-shadowed more contextualized examina-tions of the economic, social, and health risksfaced by impoverished women engaged involuntary sex work. For example, manyFSWs are the sole economic provider fortheir children, aging parents, or younger sib-lings, yet fear the loss of community respectand/or family support should the source oftheir remittances be discovered (Ragsdale &Anders, 1998, 1999). Consequently, impov-erished FSWs often seek to safeguard theiranonymity by migrating to foreign hostcountries in order to decrease the likelihoodthat their engagement in sex work will bereported back to members of their homecommunities. While continuing to supporttheir dependents, migrant FSWs are physi-cally and emotionally separated from theircommunities and families. As a further safe-guard, migrant FSWs often purposefullydistance themselves from social interactionswith those who live in the host communitiesin which they work.

International migration can place FSWs—especially undocumented workers—in condi-tions where they are vulnerable to coercionby immigration officials, police, pimps,brothel owners, and clients in the host coun-try. Vulnerability can be further increasedwhen migrant FSWs have little educationand/or do not speak the language of the hostcountry. The social invisibility of womenengaged in sexual labor, such as the migrantbrothel-based sex workers discussed in thisexample, can also affect their vulnerability,even as it makes such hidden populations dif-ficult to locate, access, and recruit to partici-pate in studies (Singer, 1999). Yet the paucityof holistically grounded research on the

socioeconomic conditions faced by FSWsincreases the difficulty of developing sociallyresponsive policies that facilitate the deliveryof services and foster advocacy for impover-ished women and their children. Although itis critical to address global issues of sexualtrafficking (Butcher, 2003), it is also impor-tant for researchers and policy makers tobe aware that even among women who“voluntarily” engage in sex work, “the linesbetween autonomy and coercion [are]neither rigid nor always easily discernible”(Kempadoo, 2001, p. 53).

Research overview. In Orange Walk Town,the investigators verbally administered aface-to-face semistructured survey to 33brothel workers who were legal migrantsfrom the adjacent countries of El Salvador,Guatemala, and Honduras (Ragsdale &Anders, 1999). Participant responses, althoughnot audiotape-recorded, were recorded asclose to verbatim as possible on each survey.The Institutional Review Board of theUniversity of Florida approved the consentprocedures, which included informing partic-ipants of the sexually sensitive nature of theresearch, their right to refuse to answer anyquestion, and their right to terminate theinterview at any time. All participants livedon brothel premises, and the interviewswere conducted on-site at each brothel. Themajority of participants planned to return totheir home country in the near future (lessthan 1 year from the date of the interview).The Orange Walk brothels accessible to theinvestigators employed between one andeight FSWs at the time of the study. It wasfrom this prospective sample of 35 womenthat Ragsdale and Anders ultimately recruited34 respondents. One prospective participant,the only Belizean national in the study,declined to be interviewed on the groundsthat she served drinks but did not engage insex work. Another participant had to termi-nate her interview shortly after it began when



one of her regular clients arrived unexpectedlyat the brothel. Therefore, the final sample of33 women represented approximately 73%of the estimated 45 brothel-based FSWs inOrange Walk Town.

Ethical challenges to transnational research.Working in the developing world can presentunexpected challenges when conductingresearch among vulnerable populations. Inthe town of Orange Walk, potential obsta-cles the investigators faced included unantic-ipated language barriers, the possibility ofcoerced participation from FSWs by brothelowners on behalf of governmental healthofficials, having to use a guide/interpreterappointed by the minister of health, inabilityto access participants off brothel premises inorder to conduct interviews, personal safetyissues while on brothel premises, and datasafety monitoring. These potential obstaclesare discussed in further detail below.

Language barriers and government-appointed interpreters. Although the officiallanguage of Belize is English, the investi-gators discovered that monolingual Spanishspeakers predominated among the localOrange Walk population, including themigrant brothel workers in the sample.Although Anders was completely bilingual,Ragsdale’s more limited Spanish languageabilities required her to conduct interviewswith the participants using the services ofan interpreter. Through NGO contacts madewhile in Belize City, Ragsdale and Anderslocated an Orange Walk–based volunteerHIV-prevention worker fluent in Spanish toact as an interpreter; however, following ameeting in Belize City, the country’s ministerof health appointed a Ministry of Healthworker to be the official interpreter for theinvestigators. The Ministry of Health workerwas an HIV outreach worker whose res-ponsibilities included visiting Orange WalkTown brothels to educate FSWs on safer sex

(including correct and consistent condomuse) and other sexual health issues. He wascomfortable and articulate discussing sexu-ally sensitive topics, yet had no enforcementobligations or reporting duties associatedwith his position as a Ministry of Healthworker. Thus, not only did he know most ofthe brothel owners and FSWs, but there wasno risk that he would disclose to authoritiespersonal information disclosed during thecourse of recruitment.

The investigators had reservations, how-ever, about accepting the “offer” of an inter-preter, based on the appointee’s status asa Ministry of Health worker. As the meet-ing with the minister of health proceeded,it became clear that declining the offeredservices would have meant canceling the pro-ject in Orange Walk Town, with the strongimplication that Ragsdale and Anders couldbe barred from conducting research else-where in the country. The investigatorsspeculated that this tactic was a maneuverto gain a measure of surveillance over theresearchers’ data collection activities. Theyalso speculated that this tactic was a way toensure the personal safety of the investigatorswhile on brothel premises in order to avoidthe possibility of an incident that couldhave negative political ramifications for thecountry. The ethical dilemma of conduct-ing research using a Ministry of Health–appointed interpreter, as opposed to one freelychosen by the investigators, was further com-plicated by the fact that the appointed inter-preter was male. When conducting sexuallysensitive research, it has become standardpractice that field staff and participants bematched according to relevant sociodemo-graphic characteristics, such as language andgender. That Anders was fluent in Spanishand female had a positive effect on rapportbuilding and information exchange betweenthe researcher and her interviewees; how-ever, on their arrival in Orange Walk,Ragsdale and Anders quickly became aware



that the Ministry of Health–appointedinterpreter was an excellent gatekeeper, ashe was well-known among the local FSWsand brothel owners in his capacity as a HIV-prevention outreach worker. The healthworker became the liaison between thebrothel owners and the investigators and wasinstrumental in facilitating the cooperationof the owners in allowing the investigators toaccess the brothels.

In his role as an HIV-prevention outreachworker, the health worker was also a skilledand experienced facilitator of discussionsrelated to sexually sensitive topics. He wason a friendly basis with the participants, whodisplayed no discomfort discussing sexwork–related issues within his presence. Thecheerful banter between the health workerand the participants attenuated—but did notdismiss—the asymmetrical power dynamicsbetween the research investigators, the inter-preter, and the participants. The healthworker proved to play an indispensable roleas the gatekeeper between the brothel ownersand the investigators, as well as between theparticipants and the investigators. He wasalso an excellent key informant who facili-tated the investigators’ understanding ofbrothel system organization in Orange WalkTown. Because he was a known and trustedentity, Ragsdale and Anders had access to 8of the estimated 10 brothels operating in thetown. The high level of success in accessingbrothels in Orange Walk Town stood insharp contrast to the investigators’ unsuc-cessful efforts to safely access brothel pre-mises in Belize City. Unaccompanied by agatekeeper, the investigators were unable togain permission from any Belize City brothelowner to gain access to brothel premises inorder to recruit potential participants whoengaged in female sex work. The researchersalso found that the stigma of conductingan investigation among sex workers wasmarkedly reduced in Orange Walk. Thereasons for this may have been two-fold:

(a) the Ministry of Health worker’s role asgatekeeper added legitimacy to the investiga-tors’ presence on brothel premises, whichwas suspect on the grounds that they werenon-Belizean, female researchers and (b) theinvestigators lived with a well-respected hostfamily within the Orange Walk Town com-munity, a senior member of which was alocal health care provider.

Coercion. The investigators carefully consid-ered the multiple issues of potential coercionin this particular setting. For example, afterhaving approved a study, governmental offi-cials in some countries may pressure brothelowners to cooperate. In turn, brothel ownersmay pressure brothel workers to participate.This was not the case in Belize. Ragsdale andAnders accompanied the health worker whenhe initially approached the brothel owners,who displayed no concern in response to therequest to interview FSWs. This is probablydue to the fact that sex work is legal in Belizeand the health worker had no direct author-ity over the brothels; however, this raisedthe issue of monitoring the safety of sensitivedata, a concern the investigators faced nearthe end of the study, which will be addressedbelow.

A related ethical concern faced by theinvestigators was whether conducting inter-views on the premises would be perceivedas coercive by the participants. Contrary toRagsdale and Anders’s expectations, discus-sions with the participants indicated thatthey perceived their involvement in sex workto be voluntary and the brothel environmentto be relatively noncoercive. For example,unlike standard practices in more coercivebrothel systems (Cwikel, Ilan, & Chudakov,2003; Reed 2001), participants in OrangeWalk Town could refuse sex with any clientat their own discretion, a right that the par-ticipants stated they exercised regularly. Inanother example of how the Orange WalkTown brothel system deviated from more



coercive brothel environments, the partici-pants were able to limit the amount and kindof sex activity in which they engaged withclients. In fact, most participants stated thatthey limited their engagement in sex work toone or two clients per night. Participants alsoreported that their duenos (brothel owners)did not retain their passports as a punitiveor coercive measure to control the movementof the brothel workers. In fact, participantswere free to move from brothel to brothel atwill, and several respondents reported thatthey had worked at three or more differentbrothels in Orange Walk Town. The lack ofan overtly coercive brothel environment waspivotal to Ragsdale and Anders’s decisionthat it was ethically feasible to conduct theinterviews on-site.

A third ethical concern was how to appro-priately demonstrate the investigators’ appre-ciation of the time participants gave theinterview. Budget constraints did not allowfor monetary compensation to participants.Therefore, the process of co-learning wasused to guide the investigators’ selection ofnail polish as a culturally appropriate tokenof appreciation for the respondents. Theyoung women who took part in the studydid not have easy access to these types of“extras.” Participants received a gift of sev-eral bottles of nail polish and appreciatedthe opportunity to choose their own favoritesamong several color options. In the processof co-learning, the investigators also wereinformed by participants that taking part inthe study had helped to alleviate the intenseboredom associated with brothel life.

Confidentiality and data monitoring. Fittingconfidentiality procedures to the culture ofsmall or closed communities is particularlychallenging in international settings (Fisheret al., 2002; Simons & Williams, 1999). Insmall developing countries, anonymity maybe difficult to maintain, and the consequencesof disclosure or participant identification

may raise serious safety issues. A breach ofconfidentiality can damage reputations andthe social networks on which participantsand their families may depend. For example,it is quite common for persons living in smallcountries to know many fellow inhabitantspersonally, by reputation, or through kin,social, and political networks. Therefore, manyFSWs migrate to foreign countries, not onlyto earn more but to ensure their anonymity.For Ragsdale and Anders’s population, therisk of a breach of confidentiality was lowbecause the migrant sex workers did not gen-erally interact with the local population.Through co-learning, the investigators identi-fied that although the participants reportedoccasional local clients, their primary clientswere transient long-haul truckers travelingthe route from Belize City to the border ofMexico.

To safeguard the study population’sanonymity, the investigators were careful notto approach participants in public venues,but only on brothel premises. Although par-ticipants did not perceive that there wasa high level of stigmatization associatedwith sexual labor in Orange Walk, theystated that they personally felt ashamed oftheir involvement in sex work and, there-fore, rarely left brothel premises. As men-tioned earlier, participants said they werenot restricted to brothel premises, as evi-denced by their ability to relocate frombrothel to brothel; yet they did not oftenfrequent the shops in Orange Walk.

Following informed consent describingthe nature of the study and their rights assubjects of research, the participants wereadministered a semistructured survey inSpanish. The nature of the survey was suchthat there was no risk that the Ministryof Health appointee, in his dual role asRagsdale’s mandated interpreter and agovernmental health worker, would discoverinformation he otherwise would not haveknown, which might place the brothel



workers at risk; however, it is important toconsider the potential ramifications regard-ing confidentiality if the participants hadbeen members of the host community ratherthan members of a migratory, transnationalpopulation that was not well integrated intocommunity life. For example, how might thisstatus difference have affected the issue ofconfidentiality posed by the mandated use ofthe health worker to conduct sexually sensi-tive research in a place were anonymityis difficult to maintain? According to therespondents, participants who migrated forthe purpose of sex work believed that mov-ing to Belize was one way to ensure that theirinvolvement in female sex work remainedunknown in their home countries.

Although such theoretical considerationsare important, the investigators were facedwith a far less theoretical dilemma after receiv-ing a surprise announcement. Near the endof the data collection phase, Ragsdale andAnders were informed that highly placedgovernmental officials had made a unilateraldecision that the Ministry of Health had pro-prietary rights to the survey data. This inci-dent highlighted the fact that investigatorswho seek to contribute to knowledge aboutproblems faced by stigmatized populationsmust be aware that the generation and dis-semination of knowledge is not always value-free when addressing socially sensitive oremotionally charged issues (Fisher, 2002;Fisher & Wallace, 2000). The investigatorsdecided that it was ethically untenable toturn over the primary data. They chose notto respond to the request and, inexplicably,were not asked to do so again; however, inher role as PI, Ragsdale had the surveys andinformed consents carried out of the countryby a trusted person as a further safeguard toensure that the data would not be confiscatedat a future date.

Research in populations of low literacy.According to Benatar and Singer (2000),

pivotal to the performance of ethicallygrounded research is “obtaining meaning-ful informed consent in the subjects’ hometongue and with an understanding of theirworld view or value system” (p. 825). Theparticipants in Orange Walk Town wereadministered informed consent in Spanish,which included informing respondents oftheir right to refuse to answer any questionand to terminate the interview at any time.Ragsdale’s interpreter initially tried to rushthrough the consent process. The PI wasadamant that each prospective respondent befully informed of her rights as a participant,and the Ministry of Health interpreter com-plied. As stated earlier, two prospective par-ticipants exercised their right to terminate thesurvey.

As Fisher and Wallace (2000) emphasize,“face validity is crucial if communities areto accept social policy proposals based onresearch” (p. 106). Engagement in co-learningis an important procedure to assure facevalidity. Through the process of co-learning,Ragsdale and Anders discovered they had toclarify or substitute particular survey termi-nology to assure the survey questions wereappropriate to the population. Such modifi-cations were tied not simply to English-to-Spanish translation but to the uniquecolloquialisms of the brothel workers. Forexample, most Orange Walk Town partici-pants were unfamiliar with the Spanish med-ical term sexo vaginal (vaginal sex), whichthey referred to in lay language as sexonormal (normal sex). A goodness-of-fitapproach also sensitized the investigators tolanguage that might be insulting or distress-ful among already stigmatized or marginal-ized participants (Fisher, 2002). Sensitiveto the historical misuse of stigmatizing lan-guage to pathologize women who engage insex work as aberrant, Ragsdale and Andersadjusted the survey term sex worker to bemore reflective of the participants’ world-view. Although most participants did not



find the unfamiliar term trabajadora delsexo (sex worker) offensive, they referred tothemselves as muchachas (girls). Ragsdaleand Anders adopted their use of the termmuchacha as a sign of respect during all inter-actions and in subsequent publications(Ragsdale & Anders, 1998, 1999). Althougha seemingly small linguistic change, the useof this term was an important signifier to theparticipants that the investigators did notview the women as aberrant. In the processof co-learning, the investigators also identi-fied that (in contrast to much of the literatureon women engaged in sexual labor) no par-ticipant referred to herself or a coworker as aprostituta (prostitute). In fact, participantsdescribed this term as nearly as offensive andderogatory as the slang term puta (whore).

Case 3. Participants as Experts:Locals and Tourists on Ambergris Caye

Ambergris Caye, Belize, was a town ofparticular interest to Ragsdale and Andersbecause of its social geography. The barrierreef offshore the resort island is one of theprimary venues used to attract internationaltourists to Belize. The investigators had anti-cipated that, due to its prominence as a touristattraction, Ambergris Caye would also havea brothel system in place as is typical of sim-ilar resort areas throughout the Caribbean(Kempadoo, 1995).

Contacting key informants. After arriving onAmbergris Caye, the investigators sought tomake contact with governmental, NGO, andhealth care providers; however, due to theisland’s small population, as well as its prox-imity to Belize City (via water taxi orairplane), the investigators found that suchresources were not readily available. Instead,Ragsdale and Anders spoke with commu-nity representatives, including tour opera-tors, hotel owners, bartenders, taxi drivers,boat captains, business owners, hotel and

restaurant workers, other local residents, andtourists. These key informants noted thatbrothel work was not typical on the island.Through firsthand observation, the investiga-tors confirmed that the well-establishedbrothel system that existed in Orange WalkTown did not operate on Ambergris Caye.For example, there was only one bar operat-ing on the caye that employed a single FSW.

During this period of initial discovery, theinvestigators also found that their status asresearchers was not recognized by key infor-mants in the manner in which it had beenin Orange Walk Town. Most residents ofAmbergris Caye initially viewed the investi-gators as another pair of single touristwomen visiting the small resort island ratherthan researchers exploring the connectionsbetween tourism and sex work in Belize.Therefore, the investigators again had toadjust their methods of data collection inorder to accommodate the local conditions atthe new field site of Ambergris Caye.

Ethical challenges to inquiry as research con-ditions change. Based on the unexpected dis-covery that there was not a population ofsex workers from which to draw a sample,Ragsdale and Anders evaluated the feasibilityof developing a new survey to explore thenature of sexual interactions between touristand local populations on the island. Theoption of developing a new survey was dis-missed as unfeasible given (a) the researchtime frame of 1 month at the site, (b) theexpense and/or limited access to necessarytechnology available on the island to developa new survey and consent form for IRBsubmission (such as exorbitant user fees forcomputers and international phone service),and (c) the time constraints involved for IRBapproval after a new consent form had beendeveloped and submitted to the Universityof Florida. Given these very real constraints,Ragsdale and Anders decided to use theirlimited time at the field site to conduct



preliminary interviews and make observationsthat would become the basis for later researchquestions. Drawing on ethnographic modelsof knowledge elicitation (Bernard, 1995;LeCompte & Schensul, 1999), Ragsdale andAnders were able to build rapport with localsand tourists to obtain a holistic snapshot ofthe complexity of sexual exchanges betweenthe inhabitants of Ambergris Caye and thetourists who migrated to the island to takeadvantage of its sun, sand, barrier reef, andother amenities.

Co-learning and community perspectives.The multimethod approach adopted byRagsdale and Anders fit well into the norma-tive life on the small island, where friendlyand informal social relationships are prized.Many of the permanent residents on the cayequickly came to know that the investigatorswere there to conduct preliminary datacollection on the nature of sex exchangesbetween local and tourist populations andwere happy to assist by contributing theirobservations. The investigators, however,found that most informants felt the processof conducting formal interviews was cold,artificial, and unfriendly; and therefore,informants resisted this method of datacollection. Local residents would not onlypoke good-natured jokes at the researcherswhen they appeared with their notebooksbut would fail to arrive for scheduled inter-views. As a way to adjust to local conditionsand assimilate more appropriately into theculture on Ambergris Caye, Ragsdale andAnders began to appear without their note-books. Instead, the investigators broughtpaper and pen tucked into their pockets formore unobtrusive note taking, which infor-mants found acceptable. The investigatorsfound that rich and descriptive conversationsoften ensued when they would informallystop by to “hangout and chat” with an infor-mant at his or her place of employment orhome. Ragsdale and Anders often shared

meals and conversation with locals whobecame friends and acquaintances, and theinvestigators began to be assimilated intonormal work activities, such as helping to“collect the door” at live band performances,rolling silverware with a waitress, foldingbrochures for a dive shop owner, watching ajewelry shop for a friend, and looking aftersmall children. In order to access the moretransient population of tourists constantlyarriving and leaving, Ragsdale and Andersmade observations and contact with maleand female tourists at bars, restaurants, andnightclubs. They struck up conversationswith tourists at these venues, as well as onthe beachfront and other venues regularlyfrequented by tourists on Ambergris Caye.

Co-learning as an avenue to research ques-tions. As stated earlier, Ragsdale and Andersconducted preliminary research on AmbergrisCaye based on a month of intensive interac-tions with locals and tourists on the island,far too short a time to make any hard-and-fast research conclusions. Rather, during thetime spent on the caye, the investigators wereable to make an important conclusion: Therewas little evidence that either organized sextourism such as exists in Southeast Asia(Troung, 1990) or the organized brothelsystems that exist in some Caribbean coun-tries (Kempadoo, 1995) was established inBelize at the time of the study. Due to thelack of a population of brothel workers towhom the survey could be administered, thetime spent on Ambergris Caye became a pre-liminary exploration of potential questionsof research. Through observation, dialogue,and elicitation among permanent residentson the island (locals) and transient popula-tions (tourists), Ragsdale and Anders wereable to establish that tourists often engagedin sexual risk behavior with fellow touristsand local residents on Ambergris Caye(Ragsdale, 2000). This finding provided thegroundwork for research conducted by



Ragsdale on the sexual risk behavior ofsingle female tourists while on vacation inCosta Rica (Ragsdale, 2002).

GOODNESS-OF-FIT ETHICS:DYNAMICS OF DOING GOOD WELL

The GFE model holds that respectfulrelationships among investigators, prospec-tive participants, and the community at largeare instrumental to fulfilling the obligation toconduct scientifically valid and responsibleresearch that serves to protect participantrights and welfare. In this final section, wediscuss the GFE model applied to an under-standing of investigator-participant powerrelationships.

Reframing the Discourse of Power

Goodness-of-fit ethics recognizes that,although power asymmetry is intrinsic to mostresearch involving human subjects, rela-tionship power is a fluid commodity that isconstantly negotiated and renegotiated(Fisher, 1997, 1999).

Those who seek greater symmetry inpower relationships emphasize that eachparty must derive something out of therelationship and be able to exercise dis-cretionary control over the resourcesprized by the other (Goodin, 1985). How-ever, these resources must be used toenhance, not compromise, the ethical andscientific integrity of experimentation.(Fisher, 1999, p. 45)

A cornerstone of the GFE model calls for“investigators engaged in the critical taskof generating the information on which . . .services, public opinion, and policies . . . willbe based” to actively engage themselves inthe “formidable responsibility of ensuringthat their procedures are scientifically

sound, culturally valid, and morally just”(Fisher et al., 2002, p. 1025). This may notbe an easy task, as scientists can be unwill-ing or unable to actively engage in the diffi-cult and personally challenging self-reflectionnecessary to lay an ethics-in-science foun-dation conducive to co-learning (Fisher,2000). In turn, co-learning requires thatinvestigators, who have often spent yearstraining to become recognized as expertsin a particular field of study or discipline,actively reframe discourses of power andhierarchy that may have afforded themspecial or privileged status, as investigatorsseek to achieve a more inclusive researchenvironment.

The exercise of inclusion, especially whenthe needs and desires of community mem-bers do not easily fit into an investigator’sresearch agenda, calls for vigilance to assureparticipant sensitive research. Although thedynamic nature of conducting human sub-jects research does not lend itself to “cookiecutter” solutions to sound ethics-in-sciencepractices (Fisher, 2004; see also Hoagwood,Jensen, & Fisher, 1996), the goal of achiev-ing GFE when designing and implementingresearch among vulnerable populations isattainable. Fisher and Wallace (2000) recom-mended several steps for achieving GFEto enhance problem identification throughco-learning activities, such as focus groups.These include (a) creating an equitable envi-ronment in which all participants are encour-aged to explore the multifaceted aspects ofthe topic under discussion, (b) interpretationof the discourse in a manner that recognizesthe dynamic nature of ethical deliberationwithin individual participants and the multi-plicity of views among participants, and (c) adetermined effort to avoid simplistic inter-pretations of participant views (e.g., a proce-dure is either right or wrong). Applyingthis approach allows for “in-depth analysis ofindividual perspectives that can challenge cur-rent ways of thinking about ethics-in-science



issues and point to new directions of moralawareness and scientific inquiry” (Fisher &Wallace, 2000, p. 102).

Goodness-of-Fit Ethicsand Multicultural Research

Members of ethnic minority or other-wise marginalized communities are oftenunderstandably skeptical about the pre-sumed benefits and/or merit of policy-driven research based on past personalexperience and observation as well as his-torical misuse of scientific findings. The callfor investigators to be proactively engagedin GFE will increase the identification ofbest practices in human subjects research asit simultaneously acts to increase trust ofresearch among ethnic minority communi-ties and their members.

The development and evaluation ofculturally appropriate co-learning proceduresto ensure goodness-of-fit in the ethical con-duct of social and behavioral research is adynamic and ongoing process. Although thereis a growing body of qualitative research onethics-in-science decision making involvingethnic minority populations, the transferabil-ity of such knowledge is less well understood.The aim of goodness-of-fit inquiry is not todocument participant perspectives that canor should dictate specific research designsor ethical practices in other ethnic minoritypopulations. Rather the purpose is to providemodels of ethical procedures reflective ofspecific participant group perspectives thatcan challenge current ways of thinking aboutethics-in-science issues and point to new direc-tions of moral awareness and scientific inquiryfor multicultural research.


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Goodness-of-Fit Ethics for Multicultural Research

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