The Handbook of Ethical Research with Ethnocultural Populations and Communities

Joseph E. Trimble, Celia B. Fisher

• Publisher: SAGE Publications, Inc
• Year: 2005
• Print ISBN: 9780761930433
• eBook ISBN: 9781483365862
• Edition: 1
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

What steps can be taken to incorporate a cultural perspective to the evaluation of research risks and benefits? How can investigators develop and implement respectful informed consent procedures in diverse cultural and language communities? What are ethical pitfalls and successful approaches to engaging in community and participant consultation? The Handbook of Ethical Research With Ethnocultural Populations and Communities, edited by Joseph E. Trimble and Celia B. Fisher, addresses these and other key questions in the first major work to focus specifically on ethical issues involving work with ethnocultural populations. Filling gaps and questions left unanswered by general rules of scientific conduct such as those embodied in federal regulations and professional codes, this Handbook will help guide ethical decision making for social and behavioral science research with multicultural groups for years to come.  

Key Features:

• Brings together for the first time a multidisciplinary blend of national leaders who specialize in the area of conducting research with ethnocultural populations
• Addresses existing issues at methodological, procedural, and conceptual levels for the responsible conduct of research in the field
• Incorporates as background a summary of leading research and scholarship on various topics framed within the authors? personal successes, challenges, and failures in the dynamic process of creating a multicultural research ethic
• Includes real-world case examples to illustrate significant ethical principles in the research venture more concretely

The Handbook is designed for graduate and advanced undergraduate students in Psychology and will also be valuable for social and medical science researchers and institutional review boards. This book will also be of interest to ethicists and bioethicists, policy makers, and foundations that fund research involving multicultural populations.   

.

Part I

FOUNDATIONS OF ETHNOCULTURAL RESEARCH AND RESEARCH ETHICS

CHAPTER 1

Goodness-of-Fit Ethics for Multicultural Research

CELIA B. FISHER

KATHLEEN RAGSDALE

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

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

In this chapter, we discuss the dynamic nature of ethnic minority status and the unique challenges and opportunities this concept presents for scientists engaged in the ethical practice of research. Next, we discuss goodness-of-fit ethics (GFE) as a model for ethics-in-science decision making (Fisher, 2004). We then discuss the concept of co-learning and its role in the process of developing GFE, using case studies to illustrate particular points. We close with a discussion of “doing good well” as a concept that involves reframing traditional power dynamics associated with behavioral science in such a way that individual participants, their communities, and researchers are actively involved in a dynamic process of mutual accommodation that also meets the requirements of the scientific process.

THE DYNAMIC NATURE OF ETHNICITY AND MINORITY STATUS

Ethnicity as a research variable is a dynamic construct continuously challenged, expanded, and revised within an ever changing sociopolitical landscape. This fluid definitional environment requires cultural and ethical competence to ensure the responsible conduct of research with ethnic minority populations in the United States and abroad. Ethnic minority populations are challenging venues within which to conduct research for reasons including historical and contemporary stigmatization, cultural attitudes regarding individual autonomy and communal responsibility, within-group cultural variation, immigration history, language, acculturation-related issues, and multiethnic heritage (Fisher, Jackson, & Villarruel, 1997). Such challenges highlight the question, “What is ethnicity?” In this chapter we define ethnicity as a collective identity based on the shared cultural heritage of a social group. Typical markers of ethnicity, which vary across groups, include dress, language, foodways, religious and traditional practices, common ancestry, and/or geographic origin (Ragsdale, 2004). We draw an important distinction between the concept of ethnicity and the concept of race, in that race is not a scientific construct but a social construct used to classify individuals based on phenotypic variation (Fisher et al., 1997; Gould, 1981). We also draw a distinction between ethnic status and minority status. Whereas minority status is often conferred on a subordinated or marginalized social group by the dominant culture, ethnic status is a claim made by a particular collective body to a designated social identity (Eller, 1999; Ragsdale, 2004). In the next section, we draw on examples from the United States in order to illustrate the fluidity of ethnicity and minority status.

Contemporary Prejudice and Changing Demographics in the United States

Members of minority and ethnically marginalized populations experience multiple incidents of actual and perceived discrimination on an individual level from peers and on an institutional level from health care providers, educators, shopkeepers, social service providers, educators, police and security personnel, and others (Chun, 1995; Demo & Hughes, 1990; Essed, 1991; Fisher, Wallace, & Fenton, 2000; Gaertner & Dovidio, 1986). The contemporary experience of institutionalized discrimination within the United States is deeply embedded within the historical groundwork of European conquest. Long before the United States existed as such, it was a multiethnic society. Individual members of indigenous populations conquered by Spanish, French, and English colonizers were assimilated into the dominant culture with varying “success,” often through institutions such as slavery, the church, intermarriage, and educational systems. Later, enslaved peoples of African descent were conscripted as field labor for agricultural exports. Still later, poverty-stricken foreign nationals (such as Asian workers imported to build the transatlantic rail system) were allowed into the United States as a form of cheap labor during the industrial revolution. By the end of the 20th century, the experience of transnational integration had accelerated with the expansion of the global economy, communication technologies, and transportation. In the contemporary United States, economic migrants from Mexico and other Central American countries perform the manual labor that many U.S. nationals will not. In addition, political refugees from around the world are granted asylum in the United States, and lotteries allow other foreign nationals to immigrate to the country.

Although members of diverse ethnic groups may have shared experiences with historical and contemporary racism, groups may experience discrimination differently. This can be traced back to earlier U.S. political and social policies regarding peoples of non-European ethnicity, as well as issues of resistance and accommodation to dominant U.S. culture (Dublin, 1996; Gould, 1981; Ragsdale, 2004). For example, Cubans arrived en masse to the United States as political refugees beginning in the early 1960s. Those Cubans who settled in Miami, Florida, developed an enclave community that wields considerable political and economic dominance in Miami-Dade County (Portes & Stepick, 1993). In contrast, Haitians who arrived en masse to the United States as political refugees in the early 1980s have continued to experience social, economic, and political marginalization in Miami (Stepick & Foner, 1998; Stepick, Grenier, Castro, & Dunn, 2003). The divergence in discrimination experienced across ethnic groups can often be attributed to racial/ethnic stereotyping, which can be both positive and negative. For example, a highstatus African national who has recently migrated to the United States may be confronted with racial/ethnic prejudice—and an accompanying loss of social status—based solely on ascribed characteristics that members of the dominant culture associate with his or her skin tone. The African national’s first experiences with racial discrimination in the United States may be a cause of intense culture shock, especially if this experience was previously unknown to the person (see Mathabane, 1990; Ogbaa, 2003). Publicized threats to members of one’s cultural group can also result in personal anxiety. The racial profiling that resulted in the 1999 police slaying of Amadou Diallo, an unarmed Guinean immigrant, exemplified the distal effects of institutional racism (Diallo, 2003). On the other hand, the generally positive stereotyping of Asians immigrants within the United States has been associated with academic achievement among some Asian youth in the U.S. educational system (Lowe, 1996).

Other factors that can mediate differential experiences of discrimination include characteristics unique to a particular ethnic enclave, such as internalized cultural attitudes that shape beliefs, decision making, and behavior (Ogbaa, 2003; Ragsdale, 2004). Despite the divergence in discrimination that ethnic groups often experience, they also may share many unique similarities as minority populations operating within a dominant society. These can include issues related to acculturation, assimilation, immigration status, and stigmatization that result in discrimination in housing, banking, educational opportunities, and health disparities (Fisher et al., 1997). Another factor that may increase the complexity of understanding how and why various ethnic groups experience marginalization differentially is that second- and third-generation ethnic minority members often have quite different experiences associated with language acquisition, cultural assimilation, and social adjustment to dominant U.S. culture than do first-generation immigrants.

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

Fisher has called for investigators to approach research ethics with vulnerable populations within an ethics framework that conceptualizes participant respect and protections in terms of the goodness-of-fit among the specific research context and the unique characteristics of the participant population (Fisher, 2003a, 2003b; Fisher & Masty, in press). Conceptualizing research risks and benefits as a product of both experimental design and participant attributes shifts judgments regarding ethical procedures away from an exclusive focus on assumed participant vulnerabilities to (a) an examination of those aspects of the research setting that are creating or exacerbating research vulnerability and (b) consideration of how the design and ethical procedures can be modified to best advance science and participant and social welfare.

The GFE framework is especially important in addressing institutional and scientific biases that often single out ethnic minority populations as posing “unique” and “difficult” ethical challenges, which can only be resolved by bending ethical requirements. For example, a situation of placing the burden of vulnerability on the participant population rather than the investigative procedures can emerge when developmental scientists argue that IRBs should permit waiver of parental permission for lower-income minority populations because of the expected low permission rates. These requests are often based on the erroneous assumption that such populations are uncaring or lack the education to understand the value of the research (Fisher et al., 1997). The reality is that ethnic minority parents often refuse to permit their children to participate in research because they distrust the motives of the researchers, do not believe the research goals will benefit their communities, are fearful that the research will further stigmatize their children, or are concerned that confidentiality breaches will lead to unnecessary government intrusion (Fisher, 2002, 2004; Fisher & Wallace, 2000).

Correcting Ethnic Bias and Misperceptions

The GFE framework for research with ethnic minority populations presents an opportunity to correct biases and misperceptions. The GFE model, like the multicultural competence model (Sue et al., 1998), assumes that adequate ethical decision making requires more than slight modifications to traditional ways of conducting science. It requires critical reflection about potential modifications in research goals and design, which can enhance scientific validity, participant protections, and social value. In order to apply the GFE model to studies involving waiver of parental permission, for example, the developmental scientist would be required to explore (a) which aspects of the research aims, designs, or recruitment procedures are “misfitted” to the values, fears, and hopes of the specific ethnic parent population and (b) how the design, aims, or recruitment procedures could be modified to produce a study that fit the requirements of population-sensitive science as well as methodologically sound science.

Research vulnerability as a relational concept. In the GFE model, research vulnerability is reduced when research procedures are fitted to participant characteristics (Fisher 2003a, 2003b, in press). In order to accomplish this, at the inception stage of research protocols, investigators should ask themselves the following questions: (a) What are the special life circumstances that render participants more susceptible to research risk? (b) Which aspects of the research design, implementation, or dissemination may create or exacerbate research risk? and (c) How can research and ethical procedures be fitted to participant characteristics to reduce vulnerability? (Fisher, 2003b; Fisher & Masty, in press)

When research involves ethnic minority populations, life circumstances that increase participants’ research vulnerability can include a combination of demographic characteristics such as language, education, minority and immigration status, disparities in health and health care opportunities, socioeconomic status, cultural assumptions about gender roles and attitudes toward authority, ethnic identity, and racial mistrust. In addition, other social or health risks may be layered on top of ethnic/cultural life circumstances, such as addiction, comorbid mental health disorders, illegal behavior, health risks (including diagnosed and undiagnosed conditions), social stigma, and membership in a violent social network. In order to establish the boundaries of GFE, such variables must be given careful consideration in toto rather than on a piecemeal basis.

GFE AND THE SCIENCE ESTABLISHMENT

The traditional science establishment has endorsed a set of values by which investigators and the public can evaluate the responsible conduct of research. When embodied in federal regulations and professional codes of conduct, these largely Eurocentric, rationaldeductive, libertarian conceptions of the good (Prilleltensky, 1997) become moral premises that resist cultural challenges (Fisher, 1999). Chief among these is the utilitarian philosophy that the morally right action is the one that produces the most pleasing consequences (Mill, 1861/1957). Applied to ethics-in-science decision making, when a conflict between scientific rigor and participant welfare arises, the investigator’s obligation to a small group of research participants may be superseded by her or his responsibility to produce reliable data that can potentially provide future benefits to members of society at large or to the participants’ particular social group. Utilitarianism thus encourages a value structure in which potential benefits of science to society can receive higher moral priority than concrete and measurable risks to research participants.

Drawing on established works on research ethics (Beauchamp, Faden, Wallace, & Walters, 1982; Freedman, 1975; Rosenwald, 1996; Veatch, 1987), Fisher (1999) identified a set of unchallenged assumptions based on traditional views of science:

• Knowledge gathering is a fundamental and unconditional good.
• Knowledge generated by the scientific method is and should be value free.
• Scientists are entitled to use humans as material for their pursuits.
• Respect, beneficence, and justice are guiding moral principles for ethical decision making in human subjects research.
• Cost-benefit analysis is an acceptable basis for deciding how to prioritize these moral principles and for guiding ethical decision making.
• Informed consent is the primary means of ensuring participants are not victims of an imbalance in favor of greater risks than benefits.
• The right to make autonomous decisions regarding research participation is dependent on the ability to weigh the risks and benefits of the experimental procedures.
• Principles of beneficence and justice can be subordinated to the principle of autonomy reflected in informed consent policies.
• The absence of harm justifies the absence of benefits if it leads to scientifically valid information.
• Science-in-ethics decision making is the province of those with professional authority, be it scientists, bioethicists, IRB members, or policy makers (Fisher, 1999, p. 36).

Challenging Traditional Scientific Assumptions

Investigator contact with the constantly shifting demographic landscape of the United States and the increasingly influential voice of ethnic minority scholars and participant communities is creating a sea change in traditional scientific value assumptions. As exemplified by the contributions to this volume, social and behavioral scientists increasingly acknowledge that the pursuit of knowledge is neither as personally value-free nor unaffected by external forces (such as the priorities of funders) as previous generations of scientists often assumed (see also Altman, 1995). The important gains that have been made within ethics-in-science decision making confirm that the reevaluation of the costs and benefits of conducting research is an ongoing process. For example, although cost-effectiveness and cost-benefit analyses have merit in particular public health arenas (Haddix, Teutsch, & Corso, 2002), their application is controversial when scholars and practitioners adopt an ultrautilitarian and noncontextualized stance (MacQueen, 2004; Pinkerton, Johnson-Masotti, Derse, & Layde, 2002).

The GFE model moves multicultural ethics further by posing several interrelated questions about these value premises (Fisher, 1999; Greenfield...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• Acknowledgments
• Preface
• Introduction: Our Shared Journey: Lessons From the Past to Protect the Future
• PART I. FOUNDATIONS OF ETHNOCULTURAL RESEARCH AND RESEARCH ETHICS
• PART II. RESEARCH ETHICS CHALLENGES INVOLVING DIVERSE ETHNOCULTURAL GROUPS
• PART III. SOCIALLY SENSITIVE RESEARCH INVOLVING ETHNOCULTURAL FAMILIES AND COMMUNITIES
• PART IV. THE RIGHTS AND RESPONSIBILITIES OF INDIVIDUALS, COMMUNITIES, AND INSTITUTIONS
• Name Index
• Subject Index
• About the Editors
• About the Contributors