The Handbook of Ethical Research with Ethnocultural Populations & Communities
Publication Year: 2006
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 ...
- Front Matter
- Back Matter
- Subject Index
- PART I. FOUNDATIONS OF ETHNOCULTURAL RESEARCH AND RESEARCH ETHICS
- Goodness-of-Fit Ethics for Multicultural Research
- Scientist-Community Collaborations: A Dynamic Tension Between Rights and Responsibilities
- First, Do No Harm: Culturally Centered Measurement for Early Intervention
- PART II. RESEARCH ETHICS CHALLENGES INVOLVING DIVERSE ETHNOCULTURAL GROUPS
- Addressing Health Disparities Through Relational Ethics: An Approach to Increasing African American Participation in Biomedical and Health Research
- In Their Own Voices: American Indian Decisions to Participate in Health Research
- “I Wonder, Why Would You Do It That Way?” Ethical Dilemmas in Doing Participatory Research With Alaska Native Communities
- Ethical Conduct of Research With Asian and Pacific Islander American Populations
- Ethical Community-Based Research With Hispanic or Latina(o) Populations: Balancing Research Rigor and Cultural Responsiveness
- Ethical Issues in Research With Immigrants and Refugees
- PART III. SOCIALLY SENSITIVE RESEARCH INVOLVING ETHNOCULTURAL FAMILIES AND COMMUNITIES
- Ethical Research With Ethnic Minorities in the Child Welfare System
- With All Due Respect: Ethical Issues in the Study of Vulnerable Adolescents
- Ethical Research Dilemmas With Minority Elders
- Changing Models of Research Ethics in Prevention Research Within Ethnic Communities
- Ethnographic Research on Drugs and HIV/AIDS in Ethnocultural Communities
- PART IV. THE RIGHTS AND RESPONSIBILITIES OF INDIVIDUALS, COMMUNITIES, AND INSTITUTIONS
- Safeguarding Sacred Lives: The Ethical Use of Archival Data for the Study of Diverse Lives
- Ethical Issues When White Researchers Study ALANA and Immigrant People and Communities
- Coda: The Virtuous and Responsible Researcher in Another Culture
Copyright © 2006 by Sage Publications, Inc.
All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
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Library of Congress Cataloging-in-Publication Data
Trimble, Joseph E.
The handbook of ethical research with ethnocultural populations and communities / Joseph E. Trimble, Celia B. Fisher.
Includes bibliographical references and index.
ISBN 0-7619-3043-4 (cloth)
1. Ethnic groups—Research—Handbooks, manuals, etc. 2. Ethnology— Research—Handbooks, manuals, etc. 3. Ethnopsychology—Research— Handbooks 4. Anthropological ethics—Handbooks, manuals, etc. I. Fisher, Celia B. II. Title.
This book is printed on acid-free paper.
05 06 07 08 09 8 7 6 5 4 3 2 1
Acquisitions Editor: Jim Brace-Thompson
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In the late 19th century, Lone Man (isna la wican), a Teton Siouan spiritual leader, is thought to have said, “I have seen that in any great undertaking it is not enough for a man to depend upon himself.” The conceptualization, organization, preparation, and writing of this handbook depended on the commitment, cooperation, and dedication of a number of scholars from a variety of academic disciplines who either are contributors to the writing of chapters or friends and colleagues who provided thoughtful guidance, criticism, and commentary along the way. We want to use this special occasion to express our profound gratitude to those kindred spirits because as Lone Man appropriately stated, we could not have produced this handbook without them.
We are grateful to our talented and thoughtful contributors. Thank you all for your assistance, persistence, wisdom, and your well-written chapters. You were patient and understanding as we persisted in our efforts to get every aspect of the review and final draft process completed in great form. You returned e-mail messages and telephone calls promptly, sought advice from us on how to improve your chapter, and cooperated in every phase of the writing and review process. We are blessed to have you as colleagues in this important topic of inquiry and exploration.
our special thanks and appreciation are extended to our dear friend and colleague, James Brace-Thompson, our senior editor at Sage Publications. Jim met with us over dinner in Chicago in August 2002 where we carefully laid out our book concept and plan. His enthusiasm for our proposal was apparent in the first 15 minutes. He has retained that level of excitement, encouragement, and commitment throughout the course of preparing and submitting the manuscripts, and without his support the handbook may not have materialized. Karen Ehrmann, our production assistant at Sage Publications, was extremely helpful in providing us with the materials we needed to expedite the production process as well as handle the many details associated with contracts and the handling of the production phase of the book. Indeed we are indebted for her careful attention to detail and, most important, her kind and gentle manner.
Joseph wishes to extend his gratitude to his graduate research assistants at Western Washington University. Ryan Dickson, MA, read through every chapter in detail with a careful eye to manuscript formatting, grammar, and composition. Janice Brendible, MEd, a Tsimshian Alaska Native from Metlakatla, Alaska, pored over every chapter and provided us with insightful comments, in part based on her experiences with outside researchers who frequented her village and her knowledge on the ethical conduct of research with ethnic communities in general. Their commentary, suggestions, and observations challenged us and thus helped us make this handbook better.[Page x]
Molly Trimble and Gary Fisher have shared the ebb and flow of our frustrations and enthusiasm for the handbook from the moment we decided to embark on our venture. They have been with us as we poured out our thoughts and annoyances over the many aspects associated with the long writing and production process. Their loving spiritual encouragement and wisdom kept us focused.
—Joseph E. Trimble Bellingham, WA
—Celia B. Fisher New York, NY
Ultimately, we learned that it is essential to include members of the participating communities in the decision making regarding research methodologies (including limits of confidentiality), the meaning ascribed to research questions and participant responses, and the analysis and interpretation of the resulting data. Without community involvement in each of these steps, it is clear that any results are questionable at best, and harmful to the communities at worst.—and
In this volume, psychological scientists examine the changing face of America and address the change head-on as it affects research design. Soon the people of America will be better described as America's people of color. in 1980, African Americans made up 11.5% of the U.S. population, Latino/Latinas were 6.4%, Asians made up 1.5%, and Native Americans 0.6% (U.S. Bureau of the Census, 1983). By the year 2000, African Americans rose to be 12.1%, Latino/Latinas nearly doubled to 12.6%, Asian Americans rose to 3.6%, and American Indians and Alaska Natives increased to 0.7%. Although European Americans increased by only 8% between 1980 and 2000, in contrast Asian Americans increased by 190%, Latino/Latinas went up 143%, African Americans gained 30%, and American Indians and Alaska Natives increased by 46% (Social Science Data Analysis Network, 2004). These populations, once known as ethnic minorities, are destined to become the majority. As they grow, they bring their own special cultural characteristics such as beliefs, language systems, traditions, customs, world-views, and values. These special characteristics must be acknowledged and understood by scholars planning research with such populations.
As ethnic populations gain in importance to scholars, the traditional approaches to responsible science demand review, reevaluation, and revision. The authors correctly contend that research with ethnocultural populations requires a paradigm shift in how social science is conducted if the research is to be considered ethical by participants reflecting the multicultural mosaic.
This is an inspiring and challenging book to read: It is sometimes confrontational and often blunt about the inadequacy of common approaches to scientific validity and human subjects protections that are steeped in traditionally accepted European American standards. The authors draw upon wisdom earned through their years of personal experience conducting ethnocultural research to challenge long-standing interpretations of ethical principles and epistemological assumptions in [Page xii]social science. They raise difficult questions of the role of investigator-participant-community power, control, and authority in strengthening or undermining scientific validity. They challenge the reader to reframe the concept of expert as it relates to informed consent and assessment of scientific value as a bidirectional dialogue between investigator and participants. Their honesty in sharing case studies of their research ethics efforts and failure will cause readers to reflect on the adequacy of current perspectives on scientific objectivity and of maintaining a neutral-observer role. overall, the message is consistently given: designing culturally valid ethical procedures for research involves adopting a new perspective, one that derives from the ethnic groups themselves rather than one that starts from prior assumptions of what constitutes human values of respect, care, and justice. This is a groundbreaking volume that offers concrete information for scholars wishing to conduct research that is culturally appropriate, ethically defensible, and scientifically sound. The authors bring their special experience and expertise to address specific populations such as immigrants and refugees, the elderly, vulnerable adolescents, African Americans, American Indians, Asian Americans, and Hispanic/ Latin(a) o Americans. In addition, authors present useful information regarding research when a community is the target, when archival documents are used, or when the setting is the juvenile justice system or a developing country.
The book provides revisions to mainstream thinking about research design, data collection, analysis, and interpretation of results to assure culturally meaningful and ethically sound outcomes. Included are discussions regarding gaining access and earning credibility, weighing the value of a selective sampling instead of a randomized sampling procedure, defining incentives in a collectivistic culture, obtaining valid informed consent, selection of instruments with relevant norms, assuring translation/conceptual/ metric equivalence, and interpreting data within the proper cultural context. Also discussed are certain ethical dilemmas such as the following:
- Whether to remain objective or become a participant in the sociopolitical structure of the people or community being studied
- Whether to maintain a neutral role or permit the research activity to be by its very nature an agent of change
- Whether to proceed when the study benefits only the researcher or offer sustainable benefits to the community, group, or individuals under study
- Whether to view the researcher as the sole authority in design of the research or include community members in all aspects of the design
This volume is truly a must read and will take its place as an essential resource for anyone involved with ethnocultural populations and communities.
—Richard M. Suinn
Professor Emeritus, Colorado State University 1999 President of the American Psychological Association
REFERENCESEthical dilemmas in doing participatory research with Alaska Native communities. In J. Trimble & C. B. Fischer (Eds.), The handbook of ethical research with ethnocultural populations and communities.Thousand Oaks, CA: Sage., & (in press).Social Science Data Analysis Network.(2004).United States population by race. Retrieved October 2004, from www.censusscope.org/us/chart_race.htmlU.S. Bureau of the Census.(1983).1980 census of population.Washington, DC: Government Printing Office.[Page xiv]
Our Shared Journey: Lessons From the Past to Protect the Future
The principle that underlies problems of ethics is respecting the humanity of others as one would have others respect one's own. If field [researchers] genuinely feel such respect for others, they are not likely to get into serious trouble. But if they do not feel such respect, then no matter how scrupulously they follow the letter of the written codes of professional ethics, or follow the recommended procedures of field (research) manuals, they will betray themselves all along the line in the little things.—
In this quote, the longtime cultural anthropologist Ward Goodenough (1980, p. 52) points to two important components of field-based research: building and establishing trust and valuing and practicing respect with the host community and the respondents. These two components are essential to the conduct of responsible research with any community or pool of respondents. The quote's theme, however, implies that there are some researchers who are not sensitive to the lifeways and thought-ways in communities where they conduct research. Most field-based researchers are conscientious, sincere in their respect for their host communities, and sensitive to ethnocultural worldviews; a few are not. Good intentions, however, are not enough to ensure research involving ethnocultural communities is conducted in ways that reflect respect for human dignity and appreciation of community values. With rare exceptions, current professional standards and federal regulations for the protection of research participants fail to provide the guidance needed to achieve the responsible conduct of ethnocultural research. The stakes are especially high for members of minority ethnic groups, who need culturally validated mental health services to redress current health disparities but who are also most vulnerable to personal and group harms that can arise when traditional ethical research practices do not adequately protect their rights and welfare (Fisher, 1999).
Goodenough's words speak to the core theme of this handbook: the responsible and ethical conduct of research involving [Page xvi]ethnocultural populations. Interest in social research with ethnocultural groups has been increasing dramatically, particularly in psychology. As contact with social scientists has increased, so have the concerns of many ethnic communities about research in general and the presence of investigators in their communities. The rising community concerns, accompanied by the emergence of community-based research review committees, present extraordinary challenges for researchers, challenges that are only beginning to be fully and seriously acknowledged at methodological, procedural, and conceptual levels. The most important challenge, though, is the responsible conduct of researchers while they are in the field, especially as it is reflected in the relationship they establish with their respondents (American Psychological Association, 2002; Cassell & Jacobs, 1987; Fisher, 1999; Fisher & Wallace, 2000).HISTORICAL OVERVIEW
Research with ethnocultural populations has a long and rich history in the annals of the behavioral and social sciences in the United States, with its beginnings dating back to the mid-to late 19th century. A case in point concerns the long, rich history of research with American Indians and Alaska Natives. Interest in compiling ethnographic materials on American Indians began in 1877 with the geographical and geological survey of the Rocky Mountain region. Some of the earliest ethnographic collections from this period are the diaries of John Wesley Powell recounting his exploration of Colorado and study of the region's Indians. Three volumes printed under authority of special resolutions of Congress had been completed by 1879. Then in that year, the United States government through the Smithsonian Institute established the Bureau of American Ethnography to sponsor and publish research on American Indians and Alaska Natives. Lasting from 1879 to 1965, the bureau published thousands of pages of quality anthropological and archaeological research on a huge variety of subjects in the form of bulletins and annual reports.
From 1879 to the present, countless numbers of graduate students and academicians in anthropology collected data and compiled thousands of reports and publications dealing with the ethos of most Indian tribes and many Alaska Native villages. It is very likely that the rapid emergence of anthropology as a recognized academic discipline in part can be attributed to the massive amount of information conducted on the Americas’ aboriginal people. Indeed, the career development of many cultural anthropologists was the result of their ongoing, lifelong studies with one or two tribes. Consequently, over the decades, well-intended researchers found their way to Indian and native communities, consorted with tribal leaders and their informants, conducted their research, snapped countless photos, recorded sacred songs, and documented rituals and ceremonies, many of which were forbidden to be witnessed by outsiders; then they left, in many instances never to be heard from again.Increases in Ethnocultural Research Citations
The historical record shows that the North American Indian and Alaska Native is probably the most studied ethnic minority group in the United States. Several significant and comprehensive bibliographies have been published in the past four decades that reflect the extensive nature of the social and behavioral science literature on America's aboriginal people. In 1957, Dockstader compiled and published an extensive list of 3,684 theses and dissertations that dealt with American Indians dating back to 1890. Hodge (1976) published a comprehensive [Page xvii]annotated bibliography listing 2,600 books and articles dealing with contemporary American Indian issues and topics; many of the cited articles are unpublished. Martin and O'Leary (1990) cite over 25,000 books and articles that describe the traditional culture and lifeways of North American Indians; about 1,700 citations deal with archaeology and another 500 focus on medical care. In 1981, Kelso and Attneave published an extensive bibliography of 1,363 citations dating back to 1930 on North American Indian mental health (Kelso & Attneave, 1981). The citations include articles covering many academic disciplines, not just psychology. Trimble and Bagwell in 1995 edited a bibliography of psychological and behavioral articles on North American Indians and Alaska Natives published from 1967 to 1994; most of the 2,328 citations published by over 3,000 behavioral and social scientists are presented in abstract or summary form (Trimble & Bagwell, 1995).
In 1988, the American Psychological Association (APA) began publishing an annotated bibliography series focusing on diverse ethnic populations. The series topics include African Americans, African American males, Hispanics, Asians, and, as mentioned above, North American Indians. The citations referenced in the special volumes provide ample testament to the fact that interest in conducting research with ethnic and racial populations is increasing rapidly; the trends are likely to increase in coming years as more and more interest is devoted to the field.
The bibliographic series documents a notable increase in citations in PsycINFO on all ethnic minority groups. Citations referencing African Americans increased from less than 2,063 in the 1960s to 10,382 in the 1990s. Research with Latino populations also showed a remarkable increase, from only 22 references in the 1960s to 3,720 in the 1990s. References on Asian Americans grew from 17 citations in the 1960s to 1,360 in the 1990s, and for American Indians and Alaska Natives from 203 to 1,434 during the same period. As can be appreciated, the increase in citations referencing research related to racial and ethnic minorities is a reflection of a maturing of psychology as a science discipline for all members of society. The rapid growth of interest and levels of research activity must be tempered by an awareness of the ethical implications of efforts involving groups with whom most investigators have little familiarity.COMPLAINTS AND CONCERNS FROM THE FIELD
The need for this book emerged from the voices of many community people across the country who have become highly vocal about the problems some researchers create for their villages, neighborhoods, and communities. More and more ethnic communities are becoming concerned about the presence of outside researchers; many are intolerant and unforgiving of past research efforts. The so-called safari-scholar era has come to an end and “data mining” is no longer acceptable. More now than ever, eth-nocultural leaders demand that research occur in their communities under their direction and control. Researchers should be prepared to collaborate with communities, share results that have practical value, and accept the conditions imposed by the community in gaining access to information and respondents (Fisher et al., 2002).
Most researchers in the biomedical and social and behavioral sciences are acutely aware of the circumstances surrounding the infamous U.S. government Tuskegee Syphilis Study when, from 1932 to 1972, medical treatment for syphilis was withheld from 600 poor African American male research participants from rural Alabama (see Jones, [Page xviii]1993). Even the most basic ethical practices common to today's human research studies were absent: Participants were never given the option to terminate their participation in the study, were misinformed that they were participating in a study to examine “bad blood,” and were induced to cooperate with free medical exams, meals, and burial insurance.
Details of the study were first published in a 1970s news story that led to an immediate call for action and an explanation from the U.S. Public Health Service. The federal government established an ad hoc committee to review the charges and allegations. At the end of the inquiry and investigation, the committee overwhelmingly concluded that the study was unethical and that it must be stopped. This prompted Public Law 93-348 calling for the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. In 1979 the commission published recommendations, known as the Belmont Report, that served as the basis for revised federal regulations published in the Federal Register in 1979 and subsequently revised several times resulting in the current Code of Federal Regulations Title 45-Part 46, Protection of Human Subjects (45 CFR 46), effective as of 1991 (U.S. Department of Health and Human Services, 2001). The Belmont Report laid out three general ethical principles that continue to govern human subjects research: beneficence, which is the maximization of benefits for science, humanity, and research participants and avoidance or minimization of risk or harm; respect, which is the obligation to protect the autonomy and privacy rights of participants; and justice, representing the obligation to ensure the fair distribution among persons and groups of the costs and benefits of research. A year later the National Association for the Advancement of Colored People (NAACP) filed a lawsuit against the federal agency on behalf of the study participants and their families; $9 million was awarded to the participants and their familial descendants. Twenty-five years later President Bill Clinton issued a formal apology. Many scholars and civil rights activists wonder why it took so long.
Undoubtedly the Tuskegee Syphilis Study is one of many instances in which scientists have exploited historically oppressed groups, ostensibly to advance an understanding of the human condition (Inbrahim & Cameron, 2005). one would believe that the outcomes of the Tuskegee study would serve as a warning to those who would abuse participants and deny them their rights; that does not appear to be the case. Consider the significance and importance of the headlines in a February 2004 Arizona newspaper that read, “Havasupai file $25M suit vs. ASU” (Hendricks, 2004). In the story, the journalist summarizes the research circumstances that prompted 52 Havasupai tribal members to file the lawsuit and provides a status report on the suit's developments. Briefly stated, between 1990 and 1994, researchers from Arizona State University collected from the 52 tribal members blood samples that were to be used to study the correlates of diabetes. Tribal members eventually learned that the blood samples had been used for purposes other than those they agreed to in signing the human subjects consent forms. The ASU researchers had used the samples to study schizophrenia, inbreeding, and factors that could explain human migration patterns.
Consider, too, the chilling, controversial allegations that riled cultural anthropologists, bioethicists, and segments of the public in 2000 following the frightening and disturbing charges made by the journalist, Patrick Tierney (2000), in his book, Darkness in El Dorado: How Scientists and Journalists Devastated the Amazon. After devoting several years to investigating how research was conducted among the Yanomami people along the Ecuador-Brazil border, Tierney [Page xix]claimed that a few notable researchers were involved in dreadful biological experiments and that field-based ethnographic data was fabricated to support long-standing socio-biological theories about aggressive behavior. Tierney's allegations fanned the flames of debate among anthropologists and ethicists. According to Miller (2001), e-mail messages “ignited a swift and furious debate that left scholars with nowhere to go for information but online” (p. 1). Eventually the American Anthropological Association (AAA) convened an expert panel to investigate the allegations and concluded that “the book contains numerous unfounded, misrepresented, and sensationalistic accusations about the conduct of anthropology among the Yanomami. These misrepresentations fail to live up to the ethics of responsible journalism even as they pretend to question the ethical conduct of anthropology” (American Anthropological Association, 2002, p. 1). Additionally and not surprisingly, Venezuela's Office of Indigenous Affairs issued a moratorium on research with and among their indigenous populations. Authorities for indigenous affairs in Brazil and Ecuador have issued similar moratoriums.
To illustrate the breadth of community concerns and problems with researchers, the American Indian Law Center (1999) compiled a list of 15 major complaints expressed by Indian and native tribal groups. Here is a sample of some of the allegations and charges:
Individual Indian people have been persuaded to participate in research in which they did not fully understand the nature of the risk to their health and safety; research was conducted which did not respect the basic human dignity of the individual participants or their religious and cultural beliefs; researchers have been interested in our people as an “isolated” or “pure” gene pool to be used for laboratory purposes, demeaning the dignity of the people and the community; researchers have sought and published sensitive religious and cultural information, in some cases destroying its efficacy by publication; researchers have taken cultural information out of context and, as a result, have published conclusions that were factually incorrect; researchers have sensationalized community, family, and individual problems and released publications heedless of their impact on our community's legitimate political and social interests; (and) despite promises at the outset that research would benefit our community, researchers have failed or refused to follow through on promised benefits [and] to share preliminary results with the community or give the community an opportunity to participate in the formulation and recommendations of a final report. (pp. 1–2)Informed Consent
There are numerous complaints flowing from the troubled voices of other ethnic minority communities across the United States. Consider, for example, the cultural implications of the federal law that requires researchers to have study participants complete an informed consent form. In some ethnocultural communities, especially those with high proportions of recently immigrated members, study participants may not understand the reason behind the use of consent forms, the technical words and scientific jargon used to describe aspects of the forms, the flow and length of the sentences and paragraph structure, and the implications if they refuse to sign. Furthermore, the readability indexes of most consent forms have been demonstrated on average to be three grades higher than one would expect for the typical study participant (Brainard, 2003). In some instances, when consent forms are translated into other languages, the English meaning of terms and the sentences do not accurately translate into words and sentences found and used in the native language of the [Page xx]participants. Furthermore, some researchers have experienced interpretation difficulties with participants who are not literate or whose reading comprehension levels are too low to understand consent forms (Gostin, 1995). In some ethnocultural communities, as suggested by Deloria (1980), “informed consent is somewhat akin to firing the warning shot immediately before the fatal bullet is sent on its way” (p. 270). A related problem arises when community participants erroneously believe that signing an informed consent form abrogates their right to withdraw from a study or issue a complaint about procedures or postexperimental reactions (Fisher, 2002).Ownership of Data
Community members often question the ownership of research findings and the protocol developed to collect the information. In effect, they are asking who owns the data when the study is completed. Is it the sole property of the researcher? Does the community research advisory board or committee have the final say on how the data is used, where it is eventually stored, and how it will be used in scientific report writing? We raise these concerns because many community review boards now require that the data should reside with them and that they provide oversight on its future regardless of the circumstances. Jaarsma (2002) addresses some of these problems and pitfalls as they relate to use of ethnographic information; however, many of the conclusions could easily be generalized to include data of any form provided by community participants. Fisher et al. (2002) also highlight the ethical challenge of identifying persons who can best represent research-relevant concerns of prospective participants. Ensuring that community consultation reflects the needs of those within the community who will actually participate in the research requires an understanding of the social structures and relationships that define a community (Weijer & Emanuel, 2000). Differences in the immigration and socialization histories of members of different ethnic and cultural groups may contribute to differences in the risks and benefits of the proposed research. There can also be instances when interests of the larger community are incompatible with the best interests or research goals of vulnerable groups within the community (Macklin, 1999). For example, individuals with addictive disorders may wish to participate in substance abuse research in the hope that it will result in immediate or future remedies, but nonaffected members of the community may reject the trial out of concern about group stigma (Fisher et al., 2002).Mistranslation and Ethnic Gloss
Members of minoritized groups who participate in research have good reason to be suspicious about the way their responses are disseminated in the press and scientific publications, as often the findings are twisted and distorted to the extent that the “true and authentic” information is obscured through interpretation (Foulks, 1989; Monberg, 1975; Norton & Manson, 1996). There is considerable concern emerging among community representatives and research scholars about the way ethnic groups are represented in research findings. As observed by Deloria (1980), more often than not there are considerable problems associated with the “mistranslation” of research outcomes. Use of measures to label respondents under group categories such as socioeconomic status, levels of acculturation, geographic locale, and ethnic and racial identification place participants in artificially constructed subgroups ostensibly for purposes of analysis and teasing out of differences among groupings.[Page xxi]
Often research findings are cast in either-or categories (high acculturation vs traditionalism, high ethnic identity vs low ethnic identity) as though such categorizations are accurate and genuine representations of the way people live their lives in their communities (Deloria, 1980). Too often ethnic groups are described using broad “ethnic glosses” or simplistic panethnic labels such as Hispanic or Asian (Fisher, Jackson, & Villarruel, 1997; Trimble, 1991). Such terms obscure unique cultural differences within different ethnocultural communities, like Puerto Rican and Chicano under the label Hispanic and Japanese and Chinese under the label Asian, and become a sorting device that has little to do with the deep cultural influences that guide a group member's thought, feelings, and behavior (Trimble, 1991; Trimble & Dickson, 2005).
Heath (1978) argues that “categories of people such as those compared under the rubric of ‘ethnic groups’ are often not really meaningful units in any sociocultural sense” and that “the ways in which people define and maintain the social boundaries between or among self-identified categories are often far more important and revealing of socio-cultural dynamics” (p. 60). Use of broad-brushed categories to describe study participants is an insult to the dignity and richness of the cultural fabric of their ethno-cultural communities. Those who develop a culturally sensitive scientific ethic must also be wary of “ethnic gloss.” A “one-size-fits-all” approach to ethnocultural research ethics will result in more harm than good when assessment of research risks and benefits, the development of informed consent and confidentiality procedures, and the identification of community partners are not informed by the specific characteristics, values, and hopes of those who will be directly involved a study or immediately affected by the dissemination of research results (Fisher, 2002).ETHNOCULTURAL ETHICS: AN EMERGING FIELD
Complaints from ethnocultural communities and research participants, as well as those from concerned researchers and scholars, have led to the publication of several reports and research guides. The publications are complete with statements of the problems associated with the abuse of ethnocultural populations, typically followed by a set of recommendations concerning culturally resonant, field-based research protocols and ethical considerations. In 1987, for example, Cassell and Jacobs edited a seven-chapter special publication of the American Anthropological Association, titled Handbook on Ethical Issues in Anthropology. The purpose of the small book was to improve and advance the ethical considerations in anthropological research and practice and encourage self-reflection on the ethics and moral thoughts and actions that bear on one's conduct in the field.
There are other similar publications worthy of recognition, although they do not fully represent the rich and inspirational literature that exists on the topic. In 2000, the American Psychological Association's Council of National Psychological Associations for the Advancement of Ethnic Minority Interest (CNPAAEMI) released a 21-page brochure drawing attention to the cultural inappropri-ateness of the methodologies of much of the research occurring in ethnic minority communities and the negative impact it was having on participants. Brochure contributors outlined a series of thoughtful procedures and guidelines for conducting, interpreting, and disseminating culturally relevant research. In 2004, Castellano with the assistance of numerous aboriginal people from Canada published a lengthy journal article proposing “a set of principles to assist in developing ethical codes for the conduct of research internal to the Aboriginal community [Page xxii]or with external partners” (2004, p. 98). Eight principles are carefully laid out calling for the appropriate and enforceable protection of aboriginal peoples’ interest in research ventures, highlighting the rights of aboriginal people as the true owners of the information they provide for researchers and researchers’ obligation to consider in their research plans the aboriginal peoples’ struggles for self-determination.
The themes and recommendations expressed in most publications—certainly in the ones described above—on the topic are consistent. Carey (2003) best summarizes these themes when he calls for a “symbiotic approach” in forming community partnerships for the purpose of research, whatever form it takes.
Community-based research projects that allow local people to define and lead the research agenda, provide an excellent model for symbiotic relationships between scholars and research populations. This approach challenges the researcher because she will not have complete control over the project, but in most cases these results provide unique data that would otherwise have been unavailable to researchers. (p. 107)The National Conference on Research Ethics for Mental Health Science Involving Ethnic Minorities
The handbook builds on the contributions described above, but the immediate impetus for it was the involvement of the editors and many of the contributors in the groundbreaking conference, Research Ethics for Mental Health Science Involving Ethnic Minority Children and Youth, sponsored by the Fordham University Center for Ethics Education, the Child and Adolescent Consortium of the National Institute of Mental Health, and the Science and Public Policy Directorates of the American Psychological Association (Fisher et al., 2002). The conference, held at Fordham University, convened a group of 50 national leaders in bioethics, multicultural research, ethnic minority mental health, and community advocacy to produce a living document to guide ethical decision making for mental health research involving ethnic minority children and youth. The conference was propelled by the ethical urgency to ensure that recent government initiatives to stimulate research on health disparities in racial and ethnic minority communities (U.S. Public Health Service, 2001) would not lead to the unintended consequences of group stigmatization, exploitation, and harm that has occurred throughout the history of medical and mental health research involving ethnic minority communities in the United States (Caplan, Edgar, & King, 1992; Darou, Hum, & Kurtness, 1993; Foulks, 1989; Harris, Gorelick, Samuels, & Bempong, 1996; Jones, 1993; Norton & Manson, 1996; Trimble, 1989). As in this volume, the conference attendees shared with each other their personal experiences and struggles as ethnic minority and majority scholars striving to work with ethnocultural communities to design and implement scientifically valid and ethically appropriate research. Many of us participating in this groundbreaking discourse among ethnocultural science stakeholders saw a need to extend the ethical discourse to research involving a broader range of populations.THE GOAL OF THIS BOOK
This volume contains 17 chapters distributed among four sections addressing (1) Foundations of Ethnocultural Research and Research Ethics; (2) Research Ethics Challenges Involving Diverse Ethnocultural Groups; (3) Socially Sensitive Research Involving Ethnocultural Families and Communities; and (4) The Rights and Responsibilities of Individuals, Communities, and Institutions. Chapter [Page xxiii]authors are distinguished and well-known researchers in the social and behavioral sciences, education, medicine, and psychiatry with extensive experience working in collaboration with ethnocultural populations.
The goal of this handbook is to produce a comprehensive document to encourage ethical decision making for social and behavioral science research that reflects the unique historical and sociocultural reality of ethnic and racial groups. The book explores and summarizes key ethical and research issues and provides guidance based on personal experience to the following questions:
- 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 needs to be considered when constructing culturally sensitive confidentiality and disclosure policies?
- What are ethical pitfalls and successful approaches to engaging in community and participant consultation?
Each section incorporates as background a summary of leading research and scholarship on these issues framed within the authors’ personal failures, challenges, and successes in the dynamic process of creating a multicultural research ethics.
The primary audiences for the handbook include upper division undergraduate students, graduate students, researchers, research policy planners and developers, program officers at private and federal funding agencies, knowledgeable community leaders, and institutional review boards. The multiple disciplines of the chapter authors (anthropology, education, medicine, psychiatry, psychology, public policy, social work) and real-world expository style of each chapter make the handbook's contents accessible to a broad range of disciplines and levels of research experience.OVERVIEW OF THE CHAPTERSPart I: Foundations of Ethnocultural Research and Research Ethics
Part I begins with Celia Fisher and Kathleen Ragsdale's innovative model for guiding ethical decision making across diverse populations, “Goodness-of-Fit Ethics for Multicultural Research.” This ethic calls for investigators to approach research ethics involving ethnic minority and other potentially vulnerable populations within an ethics framework that conceptualizes participant respect and protections in terms of the good-ness-of-fit among the specific research context and the unique characteristics of the participant population (see also Fisher, 2003a, 2003b, 2005; Fisher & Masty, in press). According to the authors, framing 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” (Fisher & Ragsdale, this volume). Goodness-of-fit ethics can help investigators guard against institutional and scientistic biases that often single out ethnic minority populations as posing “unique” and “difficult” ethical problems that have an unfortunate history of resolution by bending ethical requirements. The authors illustrate the application of this framework in a very personal case study on Ragsdale's experiences studying the lives of sex workers in Belize.[Page xxiv]
In the chapter that follows, John Fantuzzo, Christine McWayne, and Stephanie Childs recount their experiences in scientist-community collaborations from the viewpoint of the scientist and community advocate. Among the numerous lessons gathered from their work is the importance of respecting and learning from the voices of those who say no to research. Their experiences exemplify their pioneering four-step, partner-based transactional model for addressing participant rights and investigator responsibilities.
In the final chapter of this section, Nancy Busch-Rossnagel takes us on a personal life journey working with Latino/a populations that led her to challenge her early training in institutional scientistic assumptions about the benefit of intervention research to the children and families it is intended to serve. Along this journey, her partnership with Latino/a communities helped her develop an ethic of “first do not harm” that should be a moral guide for all those concerned with ensuring that the design, implementation, and outcome measures for development-promoting interventions avoid societal bias, reflect community values, and merit participant trust.Part II: Research Ethics Challenges Involving Diverse Ethnocultural Groups
Part II of this volume includes six groundbreaking chapters on ethical risks and remedies for research with distinct ethnocultural populations. The section begins with Scyatta Wallace's personal reflections and empirical findings from her work on cultural contributions to risk and resilience in African American youth. Her chapter illustrates the importance of incorporating participant perspectives in the design of ethical procedures.
Tim Noe, Spero Manson, Calvin Croy, Helen McGough, Jeffrey Henderson, and Dedra Buchwald provide an all-too-rare insight into the voices of American Indians involved in research. Among the numerous contributions of the chapter is its identification of a challenge intrinsic to work with American Indian and other communal cultures: recognizing that the dominant discourse in biomedical ethics is individualistic and, therefore, incomplete in many cultural settings that value group decision making.
In the chapter that follows, Gerald Mohatt and Lisa Thomas bring the reader into the culture of experience that insiders and outsiders bring to participatory research conducted with Alaska Native communities and show how these different cultural perspectives can be joined in the development of responsible research practices.
Challenges to the ethical conduct of research with Asian and Pacific Islander American populations are detailed through the extensive experiences of Jean Lau Chin, Jeffery Scott Mio, and Gayle Y. Iwamasa. In their chapter, the authors demonstrate the importance to ethics-in-science decision making of understanding linkages among the common and unique historical, political, immigration, language, geographic, and cultural experiences and characteristics of the diverse cultural groups making up the continuously changing Asian and Pacific Islander demographic landscape in the United States.
Felipe Castro, Rebeca Rios, and Harry Montoya examine issues in the design of methodologically rigorous research studies within the context of developing ethically responsible community-based intervention programs for Hispanic populations. The authors propose that researchers create a balance between science and community culture in order to conduct research that is respectful of the lifeways of Hispanics and those of other ethnic minority people. They argue that the product of successful university-community cooperation is the development of a new genre [Page xxv]of hybrid research studies that successfully integrate science and culture in a manner that optimizes scientific rigor, coupled with cultural sensitivity to local community needs.
In the last chapter of this section, Dina Birman gives illuminating examples of the multiple ethical dilemmas encountered in her work with immigrants and refugees. Her chapter looks at the bidirectional relationship of research ethics to immigration policy: its ability to be unduly influenced by, and unduly influence, policies that will have direct effects on the lives of those coming to the United States to escape poverty and persecution.Part III: Socially Sensitive Research Involving Ethnocultural Families and Communities
Although one might argue that all research involving racial and ethnic minorities is socially sensitive, the focus of this section is on the most vulnerable within historically oppressed ethnocultural populations. The part begins with a chapter by Katherine Elliott and Anthony Urquiza in which they discuss the need for ethical and responsible research examining the risks and benefits of child welfare services (CWS) policies and procedures, the results of which could better inform policy decisions and contribute to improved care for the safety and welfare of children. The need for CWS outcome research is most compelling for policies involving ethnic minority children and families.
The next chapter by Ana Mari Cauce and Richard H. Nobles focuses on the ethical dilemmas navigated during Cauce's pioneering research involving both parenting practices of African American youth transitioning from junior to senior high school and risk and resilience in a multicultural sample of homeless youths. Among the numerous ethical challenges Cauce faced were distinguishing community from participant needs, reflecting on the potentially stigmatizing effect of the research on participants and their ethnocultural groups, balancing obligations toward parental authority and adolescent autonomy, and protecting youth who have no adult guardians.
Susan Krauss Whitbourne, Joshua Bringle, Bobbie Yee, David Chiriboga, and Keith Whitfield introduce the reader to the unique ethical issues encountered when conducting research involving minority elders. This chapter illustrates how issues of individual autonomy, family responsibility, and cultural values toward life and death are perhaps no more central than in the study of ethnocultural populations in later life.
Fred Beauvais's chapter uncovers ethical challenges that emerge when prevention researchers enter ethnocultural communities as outsiders. The chapter highlights the special responsibilities faced by external investigators in attempt to influence the course of development in cultural populations, especially those experiencing the trauma of a wave of youth suicide or substance use. Beauvais's chapter also addresses the persistent problem of sustaining effective prevention programs within communities once research is completed.
Anthropologist Merrill Singer and his colleague Delia Easton describe the many personal and professional challenges faced by investigators conducting ethnographic research on drug use and HIV/AIDS in ethnic minority populations in the United States and abroad. The authors delve into the moral dilemmas that arise when researchers immerse themselves in the natural social and geographic “space” of research participants, gain access to the private thoughts and behaviors, interact with their neighbors and families, are present during occasions of community celebration and remorse, and are privy to, and sometimes observe participants engaged in, illegal activities.[Page xxvi]Part IV: The Rights and Responsibilities of Individuals, Communities, and Institutions
The chapters in Part IV raise research ethics concerns rarely heard by nonethnic minority researchers. In their groundbreaking chapter, Copeland Young and Monica Brooker draw upon their experiences at the Murray Research Center's Diversity Archive to articulate perhaps for the first time a uniform approach to identifying and resolving ethical challenges that arise in archival research from stored data involving communities of color. Their chapter addresses the ethical implications of data preservation and use through three critical debates: primary versus secondary data analysis, individual versus community protection, and qualitative versus quantitative data.
Janet Helms, Kevin Henze, Jackquelyn Mascher, and Anmol Satiani draw upon Janet Helms's theory of White identity development to raise ethical challenges for ethnic majority scientists working with ethnocultural populations. One of the most difficult challenges is to recognize the institutionalized, privileged status of White Americans in science and society at large and build upon that recognition in ways that create fair, unbiased, and respectful research designs and ethical procedures.
In the last chapter in the form of a coda, Joseph E. Trimble and Gerald V. Mohatt emphasize the importance and significance of the moral and virtuous character of researchers, why they must be considered in establishing community partnerships, and how one's character may influence the overall success of the research venture. “Doing good well,” as recommended in the first chapter by Celia B. Fisher and Kathleen Ragsdale, implies that the researcher and the team are virtuous people and embody values and beliefs that community members and research participants find acceptable. Framing their chapter according to six primary virtuous ethics, the authors point out that respect and trust, for example, may have different meanings and expression across cultural groups. Their meaning for researchers may not coincide with their meaning within the world-view of a culture different and foreign to the outsider. Learning the deep cultural meaning of what constitutes trust and respect, therefore, requires the researcher to spend time with the community. One will soon discover that community members will put the researcher through a sequence of tests to assess the researcher's level of commitment to working closely with them and learning about their cultural ways. Also, they introduce the concept of relational methodology. Relational methodology means that one takes the time to nurture relationships, not merely for the sake of expediting the research and gaining acceptance and trust but because one should care about the welfare and dignity of all people.OUR SHARED JOURNEY: LEARNING FROM THE PAST TO PROTECT THE FUTURE
Ethical planning for science, involving constantly changing patterns of ethnocul-tural diversity, requires flexibility and sensitivity to the contextual challenges and concerns of each ethnic group and research problem (U.S. Public Health Service, 2001). The points for consideration raised in this book are not intended to serve as regulation, policy, or absolute prescriptions for research ethics practices. Rather, the goal is to assist stakeholders in the responsible conduct of research—investigators, funding agencies, and institutional review boards, research participants, ethnocultural communities— in identifying key ethical crossroads and in developing culturally sensitive decision-making strategies.[Page xxvii]
It is not easy to write about ethics. It requires self-reflection and an ability to recognize and share with others personal values, errors of judgment, and lessons learned along the path toward the respectful and responsible conduct of research. We are grateful to our contributors for the courage and generosity they have demonstrated in their remarkable chapters. We hope this volume provides encouragement and support for our fellow scientists as we all continue on this journey toward establishing a research ethic that reflects the values and merits the trust of ethnocultural populations.REFERENCESAmerican Anthropological Association.Preface for El Dorado Task Force papers.(2002).2005Retrieved March 16 from www.aaanet.org/edtf/final/preface.htmAmerican Indian Law Center.(1999).Model tribal research code: With materials for tribal regulation for research and checklist for Indian health boards (3rd ed.).Albuquerque, NM: Author.American Psychological Association.Ethical principles of psychologists and code of conduct.American Psychologist57(2002).1060–1073.Study finds research consent forms difficult to comprehend.Chronicle of Higher Education(2003, January 17).p. 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About the Editors[Page 355]
Joseph E. Trimble, PhD (University of Oklahoma, Institute of Group Relations, 1969), formerly a Fellow at Harvard University's Radcliffe Institute for Advanced Study, is Professor of Psychology at Western Washington University, a Senior Scholar at the Tri-Ethnic Center for Prevention Research at Colorado State University, and a Research Associate for the National Center for American Indian and Alaska Native Mental Health Research at the University of Colorado Health Sciences Center. He has held offices in the International Association for Cross-Cultural Psychology and the American Psychological Association. He holds Fellow status in three divisions in the APA (Divisions 9, 27, and 45). He is pastPresident of the Society for the Psychological Study of Ethnic Minority Issues (Division 45 of the APA) and a council member of the Society for the Psychological Study of Social Issues (Division 9 of the APA). He has generated over 100 publications on cross-cultural and ethnic topics in psychology, including 14 edited, coedited, and coauthored books; his most recent coedited Handbook of Racial and Ethnic Minority Psychology was selected one of CHOICE Magazine's Outstanding Academic Titles for 2004. The majority of his articles, book chapters, and books focus on the role of culture and ethnicity in psychology, with an emphasis on American Indian and Alaska Native populations. In the past decade, though, he has expanded his interests to include writing and research on ethnic and racial identity, cultural measurement equivalence, spirituality, and ethics, as well as contributing to the growth of ethnic psychology. He has received numerous excellence in teaching and mentoring awards for his work in the field of ethnic and cultural psychology, including the Excellence in Teaching Award and the Paul J. Olscamp Faculty Research Award from Western Washington University; APA's Division 45 Lifetime Achievement Award; the Janet E. Helms Award for Mentoring and Scholarship in Professional Psychology at Teachers College, Columbia University; the Washington State Psychological Association Distinguished Psychologist Award for 2002; and the Peace and Social Justice Award from APA's Division 48.
Celia B. Fisher, PhD, Marie Ward Doty Professor of Psychology and Director of the Fordham University Center for Ethics Education, is a member of the DHHS Secretary's Advisory Committee on Human Research Protections (SACHRP), Co-Chair of the SACHRP Subcommittee on Research Involving Children, Vice Chair of the APA Insurance Trust, and a founding editor of the journal Applied Developmental Science. She chaired the APA's Ethics Code Task Force, the New York State Board for Psychology, the Ethics Committee of the Society for Research in Child Development, and the National Task Force on Applied Developmental Science and is past member of the Ethics Working Group of the National Children's Study, the NIMH Data Safety and Monitoring Board, and the Institute of Medicine's Committee on Clinical Research Involving Children. She is author of Decoding the Ethics Code: A Practical Guide for Psychologists (Sage Publications); coeditor of five books [Page 356]including Ethical Issues in Mental Health Research With Children and Adolescents ((Lawrence Erlbaum) Erlbaum; author of over 100 publications in the areas of ethics and lifespan development, commissioned papers for the President's National Bioethics Advisory Commission on relational ethics and vulnerable populations, and ethics of suicide research for NIMH. With support from NICHD, she is studying how to assess and enhance research consent capacity of adults with developmental disabilities. With funding from NSF and NIH, she has developed research ethics instructional materials for undergraduates, graduate students, senior scientists, and IRBs. In July 2001, she co-chaired the APA, NIMH, and Fordham Ethics Center-sponsored national conference on Research Ethics for Mental Health Science Involving Ethnic Minority Children and Youth (American Psychologist, December 2002).
About the Contributors
Fred Beauvais, PhD, is a Senior Research Scientist with the Tri-Ethnic Center for Prevention Research at Colorado State University. He is Principal Investigator on a research project funded by the National Institute on Drug Abuse that examines the trends and patterns of drug abuse among American Indian adolescents with an emphasis on risk and protective factors and the impact of cultural identification on drug use patterns. This project has been ongoing since 1974. He also participates in a number of other research projects that are concerned with social and psychological problems confronting ethnic minority populations, including violence, victimization, delinquency, school dropout, and suicide. In addition to his interests in specific research topics, he has written extensively on the procedures and ethics of conducting research among ethnic minority populations with a special interest in the promotion of collaborative research models. He has served on the National Advisory Council for the National Institute on Alcohol Abuse and Alcoholism and is a member of several review panels.
Dina Birman, PhD, is an Assistant Professor of Psychology in the Community and Prevention Research Division at the University of Illinois at Chicago. Her expertise is in the area of acculturation, adaptation, and mental health of refugees and immigrants. Her research builds on 6 years of applied experience in refugee mental health. From 1991 to 1997, she worked in the Refugee Mental Health Program at the National Institute of Mental Health and Substance Abuse and Mental Health Services Administration (SAMHSA), where she provided consultation and technical assistance on mental health issues to the Office for Refugee Resettlement (DHHS) and to the state and local programs that they fund. Her research has focused on understanding the long-term acculturation and adaptation of adolescent, adult, and elderly refugees from the former Soviet Union, Somalia, and Vietnam and, more recently, mental health services for refugee youth and families. She is the author of about 30 papers in professional journals and edited books on these topics and has developed technical assistance documents for teachers working with refugee students published by the Spring Institute of Intercultural Learning in Denver.
Joshua R. Bringle, MS, is a doctoral candidate in psychology at the University of Massachusetts, Amherst. His research interests focus on normative aging and adult development, specifically psychosocial processes at the end of life. He anticipates finishing his PhD in spring 2006.
Monica Brooker is a member of the NIMH-funded Diversity Archive team at the Murray Archives. She graduated cum laude from Harvard University with an ALB in Psychology and is presently a Teaching Assistant. As President of the Harvard Extension Student Association, she cofoun-ded the Harvard Extension Research Day, providing nontraditional students an opportunity to participate and think critically about research processes. Her primary research interests include coping, resilience, and protective behaviors among children of parents with mental illness; [Page 358]resiliency in young adulthood; and measurement of subjective well-being.
Dedra S. Buchwald, MD, is a Professor of Medicine at the University of Washington. She has developed a program of culturally appropriate research that spans a wide range of topics, including physical and mental health, career development and training, and health care services and utilization in both urban and rural settings. She is involved in several program projects that address medical issues in native communities. She is the Director of the NIA-funded Native Investigator Faculty Development Program that trains native faculty to conduct health-related research in their own communities.
Nancy A. Busch-Rossnagel, PhD, is the Dean of the Graduate School of Arts and Sciences and Professor of Psychology at Fordham University. In past years, she has served as Consultant for the New York City Board of Education and the New York City Department of Heath, supervised standardization testing for the Bayley Scales of Infant Development for the Psych Corporation, and completed a term as Editor of the Research Monographs in Adolescence. Currently she is an Editorial Board Member for the journal Applied Developmental Science and on the executive committee for the Association of Graduate Schools in Catholic Colleges and Universities. Her specialty within psychology is human development. Her research focuses on parent-child relationships, particularly on socialization in Latino families and ethnic differences in parenting. In this area, she explores the relationship of maternal teaching behaviors to the development of mastery motivation and self-concept in young children and works to identify the best practices for the creation and validation of culturally centered measures of early child development and socialization. She has mentored more than 30 dissertations, and her students are now on the faculties of universities and colleges and applied research psychologists in hospitals and research institutes.
Felipe Gonzalez Castro, PhD, is Professor of Clinical Psychology at the Department of Psychology, Arizona State University. He received his master's degree in social work from the UCLA School of Social Welfare in 1976, and his PhD in clinical psychology from the University of Washington in 1981. Currently he is developing a methodology for conducting robust qualitative research that examines cultural issues with members of special populations. He is also a regular proposal reviewer for numerous federal and state institutes, including the NIDA Epidemiology of Drug Abuse Review Committee. He is especially interested in mentoring graduate students in clinical psychology to prepare them for the conduct of scientifically rigorous, yet culturally rich research with racial/ethnic minority populations.
Ana Mari Cauce, PhD, Earl R. Carlson Professor of Psychology and Professor of American Ethnic Studies, is Chair of the Department of Psychology at the University of Washington. For over 20 years, she has been conducting research focusing on normative and nonnormative development with ethnic minority adolescents and/or youth growing up in difficult circumstances. She was the 2003 recipient of the Distinguished Contribution Award from the Society for Community Research and Action for her contributions to research focusing on the prevention of negative behavioral and educational outcomes for at-risk youth. In 2002, she received the Distinguished Contribution Award from the American Psychological Association Minority Fellowship Program for her work on culture, ethnicity, and context. She has also served on numerous national panels including the [Page 359]National Academies of Sciences Board on Family, Youth, and Children; the Advisory Board of the National Hispanic Science Network; the College Board's National Task Force on Minority High Achievement; and the West Coast Selection Committee for the Marshall Scholarship. She has received research grants from the National Institute of Mental Health, the National Institute of Child Health and Human Development, the National Institute of Drug Abuse, the National Institute on Alcohol Abuse and Alcoholism, and the W. T. Grant Foundation.
Stephanie Childs, PhD, is the Assistant Director for the School District of Philadelphia's 5,000-family Head Start Program. She received her doctoral training in Educational Leadership at the University of Pennsylvania. She has been honored by the University of Pennsylvania by receiving the Distinguished Alum Award. For the past three decades, she has made substantial contributions to early childhood education as an educator, administrator, and researcher. Her work has focused local and national attention on how family and community involvement enhances the quality of early childhood education. Her research on family involvement in education has been published in the leading journals in early childhood education.
Jean Lau Chin, PhD, is Systemwide Dean of California School of Professional Psychology at Alliant International University. She is a licensed psychologist with 30 plus years of experience including President of CEO Services providing clinical, educational, and organizational consulting services; Associate Professor at Boston University School of Medicine as core faculty for the Center for Multicultural Training in Psychology; Regional Director of Massachusetts Behavioral Health Partnership; Executive Director of South Cove Community Health Center; and Codirector of Thom Child Guidance Clinic. She has two books released recently: She was Editor of The Psychology of Prejudice and Discrimination, a four-volume set on racism, ethnicity, gender, and all forms of discrimination; she authored Learning From My Mother's Voice, an oral history weaving mythology and legend as a healing and transformational journey for Chinese American immigrants. She is working on her upcoming book on feminist leadership and is currently Editor of the Race and Ethnicity Series of Praeger Press.
David A. Chiriboga, PhD, is Professor of Aging and Mental Health, Florida Mental Health Institute, University of South Florida. His research involves study of the influence of stress exposure on mental health; longitudinal study of acculturation and differential mental health issues in minority and majority populations; use of multimedia and distance technologies for health care and for training; and the use of large administrative data sets, such as Medicare and Medicaid, to study state-sponsored service initiatives and their efficacy in ethnic minority populations. He has served on two chartered NIMH review committees and is currently a member of a National Institute on Disability and Rehabilitation Research (NIDRR) chartered study section and of the Aging and Substance Abuse Task Force under the Substance Abuse and Mental Health Services Administration. He serves on the editorial boards of the Journal of Gerontology: Psychological Sciences and the Journal of Health and Aging. He is a Fellow in the Gerontological Society of America and in three divisions of the American Psychological Association.
Calvin Croy, PhD, is a Senior Instructor in the American Indian and Alaska Native Programs (AIANP) at the University of Colorado at Denver and Health Sciences Center where he provides statistical analysis support. He has coauthored papers about alcohol dependence and natural recovery [Page 360]at American Indian reservations and on statistical sample size determination. His current research interest is methods for data imputation. Prior to joining AIANP, he conducted research on the temporal stability of hobbies and leisure interests for National Demographics & Lifestyles and the Polk Company where he was Vice President of Research.
Delia Easton, a medical anthropologist, works as a qualitative researcher at the New York City Department of Health and Mental Hygiene. Her interests include the political economy of health, urban anthropology, the legacies of welfare reform, the development and applicability of structural interventions for HIV/AIDS, socioeconomic and ethnic disparities in health, the impact of institutionalized and internalized racism on health, and concern about HIV/AIDS, among competing health concerns among Puerto Rican youth. She teaches about racial/ethnic health disparities, community health, and the theory of health practice for the Hunter College Urban Public Health Program.
Katherine Ann Gilda Elliott, PhD, is a Psychologist at the Child and Adolescent Abuse Resources and Evaluation Diagnostic and Treatment Center of the University of California, Davis Medical Center in Sacramento, California. She provides bilingual assessment and psychotherapy services to children and families affected by family violence, focusing on parent-child interaction therapy with Spanish-speaking children in the Sacramento County Child Welfare System. In addition, she conducts training workshops for mental health providers throughout California.
John Fantuzzo, PhD, is the Diana Rausnitz Riklis Professor in the Graduate School of Education at the University of Pennsylvania. His research focuses on the design, implementation, and evaluation of school-and community-based strategies for young, low-income children in high-risk urban settings. In recent years, he has conducted longitudinal studies in Head Start that relate to the impact of community and family violence on school readiness, examine the development of approaches to learning, and investigate the effects of early social/ emotional adjustment problems and early school success. Also, he has been involved in population-based studies involving citywide, integrated databases across agencies serving young children.
Janet E. Helms, PhD, is the Augustus Long Professor in the Department of Counseling, Developmental, and Educational Psychology at Boston College. She is also the founding director of the Institute for the Study and Promotion of Race and Culture, a scholarly organization intended to conduct research and train researchers to value and respect racial and cultural diversity in their research and practice. She has authored many papers on the topics of racial identity and racial and cultural dynamics and assessment. More importantly, she has supervised the doctoral training of over 50 women and men who have made a positive difference in the world via their focus on diversity.
Jeffrey A. Henderson, MD, MPH, is an Assistant Professor in American Indian and Alaska Native programs at the University of Colorado at Denver Health Sciences Center. He is a Lakota and enrolled member of the Cheyenne River Sioux Tribe. After receiving his medicine and public health degrees at UC San Diego and the University of Washington, respectively, he worked as a clinician for the Indian Health Service. A board-certified Internist and Epidemiologist, in 1998 he founded the Black Hills Center for American Indian Health, a community-based, nonprofit organization whose mission is to enhance the wellness of American Indians living on the northern plains through research, service, education, and philanthropy.[Page 361]
Kevin T. Henze is a doctoral student in counseling psychology at Boston College. As a member of Dr. Janet E. Helms’ Institute for the Study of Race and Culture (ISPRC) research and support team, he has coauthored several articles, revitalized ISPRC's website twice, and co-coordinated four ISPRC Diversity Challenge conferences. His dissertation research involves the interface of White racial identity development, gender identity, and intergroup relations. His passion for teaching was recognized in 2003 with a Boston College Donald J. White Teaching Excellence Award.
Gayle Y. Iwamasa, PhD, is an Associate Professor in Community-Clinical Psychology at DePaul University. She received her PhD in Clinical Psychology from Purdue University. Her research and clinical interests are in ethnic minority mental health, with a specific expertise in Asian American mental health. Her research on the mental health of Japanese American older adults has been funded by the National Institute of Mental Health. She is the editor of two books, 16 peer-reviewed journal articles, and 11 book chapters. She has presented her work in over 100 national and international presentations. She has served in many leadership roles in national organizations, including President, Asian American Psychological Association; Vice Chair, Committee on Women in Psychology, American Psychological Association; and Coordinator of Professional Issues and Coordinator of Membership for the Association for Advancement of Behavior Therapy.
Spero M. Manson PhD (Pembina Chippewa), is Professor of Psychiatry, and Head, American Indian and Alaska Native Programs at the University of Colorado Health Sciences Center. His research portfolio currently exceeds $60 million, involving 98 native communities. He has published 160 articles on the assessment, epidemiology, and prevention of alcohol, drug, mental, and physical health problems across the developmental life span of American Indian/Alaska Native people. He has received numerous awards for his work, including the Beverly Visiting Professorship, University of Toronto (1995); the Indian Health Service's Distinguished Service Award (1996, 2004); the Rema Lapouse Mental Health Epidemiology Award from the American Public Health Association (1998); the Walker-Ames Professorship at the University of Washington (1999–2000); Hammer Award from former Vice President Gore (1999), 10 Best TeleHealth Programs in the United States (2002); election to the prestigious Institute of Medicine (2002); and Stoklos Visiting Professorship at the University of Arizona (2004).
Jackquelyn Mascher is a doctoral candidate in counseling psychology at Boston College. Her research interests include racial identity development, issues of power and privilege, psychosocial colonization and trauma, the misreading and rereading of historical events, intersexuality, and unified theory. Her dissertation is a study on the relationship between White racial identity and the teaching beliefs of psychology professors. She continues to work closely with the staff of the Institute for the Study and Promotion of Race and Culture (ISPRC) founded by Dr. Janet E. Helms. She holds a bachelor's degree in Psychobiology from Yale University and two master's degrees from Lehigh University, one in social restoration and the other in counseling and human services.
Helen McGough has supported the human subjects review function at the University of Washington for over 19 years. She is a member of the board of directors for Public Responsibility in Medicine and Research (PRIM&R), a nonprofit organization devoted to the ethical conduct of research, and serves as a faculty member for PRIM&R's 101 [Page 362]On-The-Road Program. She is on the editorial board of the journal, IRB, and is a member of the board of directors of the Association for the Accreditation of Human Research Protection Programs. She edits the newsletter for the Applied Research Ethics National Association (ARENA).
Christine McWayne, PhD, is an Assistant Professor in the Department of Applied Psychology at New York University. She is currently involved in partnership-and community-based research within the Head Start community in New York City. Generally, her research interests include family involvement in children's education in low-income communities; helping to establish a whole-child understanding of low-income, preschool children's school readiness competencies; and validating assessment instruments and intervention for low-income, preschool children and their families. Her recent research has focused on the examination of multiple dimensions of school readiness within the context of classroom quality and the social and structural dimensions of urban neighborhoods.
Jeffery Scott Mio, PhD, is a Professor in the Psychology and Sociology Department at California State Polytechnic University, Pomona, where he also serves as the Director of the MS in Psychology program. He taught at California State University Fullerton in the Counseling Department from 1984 to 1986 and at Washington State University in the Department of Psychology from 1986 to 1994 before accepting his current position. His interests are in the teaching of multicultural issues, the development of allies, and how metaphors are used in political persuasion.
Gerald V. Mohatt, EdD, is Professor of Psychology and Director of the Center for Alaska Native Health Research at the University of Alaska Fairbanks. Throughout his career, he has focused on building new settings in rural areas to increase opportunity for rural indigenous groups. His current work is to establish a permanent center to do interdisciplinary research on health disparities of Alaska Natives. He was raised in rural Iowa. He has two sons, their two partners, and a soon-to-be-born granddaughter. He has worked with American Indian, Canadian First Nations, and Alaska Natives since 1968.
Harry Montoya is President and CEO of Hands Across Cultures Corporation, an agency involved in community mobilization efforts and the promotion of educational, health, and social service programs. He has a master of arts degree in counseling psychology from New Mexico State University and a bachelor of arts in psychology from Westmar University in LeMars, Iowa. He served on the Pojoaque Valley School Board and as President of the New Mexico School Boards Association, as well as on various committees for the National School Boards Association. In June 2002, he was elected to the Santa Fe County Board of County Commissioners. Also in 2002, he was recognized by De Colores, Inc. when he was the recipient of the Business Leadership Award.
Richard H. Nobles is a graduate student in child clinical psychology at the University of Washington. He received his undergraduate degree in psychology from Yale University where his senior thesis focused on depression in young adults who identified as both ethnic and sexual minorities. His research interests include developmental psychopathology in at-risk adolescent populations and the prevention of internalizing disorders in adolescence.
Tim D. Noe, MDiv, is currently a doctoral candidate in the Graduate School of Public Affairs at the University of Colorado in Denver. He serves in several capacities at the American Indian and Alaska Native programs of the University of Colorado [Page 363]Health Sciences Center in Denver including Project Director of a smoking cessation clinical trial for native elders and a project focusing on assessing Lakota attitudes toward health-related research. He is also Deputy Administrative Director for two federally funded program project grants focusing on health disparities. He was also the former Deputy Director of the National Program Office of the Healthy Nations Initiative, which focused on reducing the harm caused by substance abuse in AIAN communities. He has coauthored a number of publications on substance abuse prevention programming with youth and families, numerous journal articles, and a family-based substance abuse prevention curriculum.
Kathleen Ragsdale, PhD, is a Research Associate at the Fordham University Center for Ethics Education. Her academic and research interests include minority health disparities and HIV/AIDS, applied anthropology as it relates to public health, gender and power disparities, ethically relevant research, and health-related social justice for minority and vulnerable populations. She received a doctoral degree in anthropology with a specialization in medical anthropology and health communication from the University of Florida in 2002. While at the University of Florida, she received the Tinker Field Research Grant for Latin American Studies, the John M. Goggin Award for Outstanding PhD Research and Writing in Anthropology, and an International Population Studies Scholarship to attend the Population Fellows Programs, Summer Course in International Population at the University of Michigan. While an NIMH NRSA Fellow at CAIR, she was named a Health Disparities Scholar by the National Institutes of Health and competitively received a Health Disparities Research Loan Repayment Program Award through the National Center on Minority Health and Health Disparities. Her international field experience among diverse ethnic groups has included research among the indigenous Kuna Yala of Panama, hurricane disaster recovery in the U.S. Virgin Islands, ethno-botanic research among first-generation immigrants in Miami, Florida, and other minority health-related projects in Belize, Costa Rica, and Milwaukee, Wisconsin.
Rebeca Rios is a first-year PhD student in clinical psychology at Arizona State University. Ms. Rios came to ASU from the University of California San Francisco where she worked for the Substance Abuse Research Program. Previously, as a Research Assistant at the American Institutes for Research in Washington, D.C., she worked on several federal contracts, including a project contracted by the Office of Minority Health to create teaching modules in cultural competence and a SAMHSA-funded contract to support community collaboration in children's mental health programs. Ms. Rios earned her BA in psychology from Georgetown University in 1999. Her current research interests include sociocultural aspects of resilience in health behaviors and community health psychology.
Anmol Satiani is a doctoral candidate in the counseling psychology program in the Carolyn A. and Peter S. Lynch School of Education at Boston College. She was a graduate assistant for 3 years in the Institute for the Study and Promotion of Race and Culture (ISPRC) founded and directed by Janet E. Helms. She is currently a predoctoral intern at the University of Illinois Chicago (UIC) Counseling Center. Her dissertation research is concerned with indigenous beliefs about suffering and healing among South Asian immigrant women.
Merrill Singer, PhD, is the Associate Director of the Hispanic Health Council and Director of the HHC's Center for Community Health Research in Hartford, Connecticut, as well as [Page 364]a scientist affiliated with the Yale University Center for Interdisciplinary Research on AIDS. He has been the Principal Investigator on a continuous series of applied federally funded drinking, drug use, and AIDS prevention projects since 1984 and currently is the Principal Investigator on a CDC-funded study designed to monitor emergent drug use trends and to build community health responses to identified public health risks. Additionally, he is the co-Principal Investigator on three studies: sexual communication and risk among inner-city young adults (CDC); assessing the implementation of oral HIV testing among injection drug users in Rio de Janeiro, Brazil (NIDA); and testing the implementation of hepatitis B vaccination of injection drug users in Hartford and Chicago (NIDA). He has over 150 published articles and chapters in health and social science journals and books, writes a regular column for the Society for Applied Anthropology Newsletter, and is author, coauthor, or coeditor of 10 books. His newest edited volume, Unhealthy Health Policy (AltaMira) was published in September 2004. Several additional volumes, Something Dangerous: Emergent and Changing Illicit Drug Use Patterns and Their Public Health Implications (Waveland), Communities Assessing Their AIDS Risk (Lexington Books), and New Drugs on the Street: Changing Inner City Patterns of Illicit Consumption (Haworth Books) are in press and will be available in 2005. In addition, he has served as the Associate Editor of the journal Medical Anthropology, is the current Book Editor of Medical Anthropology Quarterly, and is an editorial board member of the Journal of Ethnicity and Substance Abuse and the International Journal of Drug Policy. Recently, he was selected as the first recipient of the new Practicing Anthropology Award by the Society for Medical Anthropology.
Lisa R. Thomas, PhD, is a postdoctoral Fellow at the Alcohol and Drug Abuse Institute at the University of Washington and is Tlingit, Eagle, Dog Salmon. She has a doctorate in clinical psychology and has focused her work in American Indian and Alaska Native communities. She has a background in sobriety and wellness-oriented prevention and intervention programs. She has worked with the University of Washington and the Seattle Indian Health Board as part of a team that developed a bicultural life skills prevention/intervention program for native youth, the Journeys of the Circle Project. She has also worked with University of Alaska Fairbanks on a statewide research project with Alaska Natives, identifying individual, family, community, cultural, and spiritual factors in sobriety processes for Alaska Natives. She has worked as well with her tribe, Central Council Tlingit and Haida Indian Tribes of Alaska, on a multiyear wellness project with the goal of enhancing wellness in locally driven, culturally appropriate community programs. Currently, she is working with two reservation tribal communities in the Pacific Northwest to implement and test the Journeys of the Circle intervention with reservation-based native youth and is providing evaluation and consultation for tribal corporations and communities in Alaska. She is involved at the national level to work toward cultural competence and relevance at all levels of mental health research and service provision.
Anthony J. Urquiza, PhD, is a Clinical Associate Professor and Director of Mental Health Services at the CAARE Center, Department of Pediatrics, UC Davis Medical Center. During the last decade, he has been adapting parent-child interaction therapy (PCIT) to families involved in child welfare systems. His empirical research has supported the benefits of PCIT with both abusive [Page 365]families and foster families. In addition, he has been instrumental in developing PCIT as an intervention for Spanish-speaking families. He is currently involved in a PCIT dissemination training project, which is training 40 community mental health agencies throughout the state of California.
Scyatta A. Wallace, PhD, is an Assistant Professor in the Department of Preventive Medicine and Community Health at SUNY Downstate Medical Center, where she serves as faculty in the Masters of Public Health Program. Her research interests include examining cultural and contextual factors associated with health outcomes and the development of culturally relevant behavioral health interventions for Black populations. Currently, she is an Investigator on a study examining cultural and contextual influences associated with sexual risk reduction among ethnically diverse Black adolescents and a study examining attitudes towards HIV and HIV testing among urban and rural young-adult Black populations. She was a research fellow at the Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention (CDC). She has been featured in the APA Monitor (2001). She is an NIH Health Disparities Scholar since 2002, received the first Dalamas A. Taylor Summer Policy Fellowship (2000) awarded by the American Psychological Association and Society for the Psychological Study of Social Issues, obtained a dissertation grant from the Center for Ethics Education (2000), and was selected as a member of the Graduate Research Ethics Education Training Program from the National Science Foundation and Association for Practical and Professional Ethics (19982001). She serves on the editorial boards of the scientific journals, Applied Developmental Science and Journal of Black Psychology.
Susan Krauss Whitbourne, PhD, is Professor of Psychology at the University of Massachusetts Amherst. A Fellow of the American Psychological Association (APA), she is Past President of Division 20 (Adult Development and Aging) and is serving as Council Representative and a member of the Policy and Planning Board. She is a Fellow of the Gerontological Society of America, serving as Chair of the Distinguished Mentorship Committee for the Behavioral and Social Sciences (BSS). Her teaching was recognized with a University Distinguished Teaching Award, and she has won the APA Division 20 Master Mentor Award and the GSA BSS Distinguished Mentorship Award. With research interests in psychosocial development in mid-and later life, she is currently completing a 34-year sequential study of college alumni through midlife. She serves on the editorial boards of the Journals of Gerontology: Psychological Sciences and Developmental Psychology.
Keith Whitfield, PhD, is Associate Professor and the Graduate Professor in Charge in the Department of Biobehavioral Health at the Pennsylvania State University. His research involves focuses on individual differences in the health of older minorities. He serves as Chair for the Gerontological Society of America's Task Force on Minority Issues. He was a member of the National Research Council/National Academy of Sciences Aging Mind Committee and currently serves on the Research Agenda for the Social Psychology of Aging Committee. He is a member of the NIA-Behavioral and Social Science Review Committee and also reviews regularly for the Alzheimer's Association. He is a member of the National Advisory Board for the Center for Urban African American Aging Research at the University of Michigan and the Institute on Aging at Wayne State University. He also serves as an Associate Editor for Experimental Aging Research and is on [Page 366]the editorial board for the Journal of Applied Developmental Psychology.
Barbara W. K. Yee, PhD, is Professor and Chair of the Department of Family and Consumer Sciences, College of Tropical Agriculture and Human Resources at the University of Hawaii at Manoa. She has taught at the University of Texas Medical Branch, University of Oklahoma, and University of South Florida. Since the fall of Saigon in 1975, she has been interested in how middle-aged and elderly Southeast Asian refugees adapt to the loss of homeland and culture. Her current research examines how acculturation influences health beliefs and lifestyle practices across three generations of Vietnamese adults living in the United States. She is a Fellow of the American Psychological Association and Gerontological Society of America. She serves on the Expert Panel of Minority Women's Health, Office of Women's Health, DHHS, and on the steering committee for the Bright Futures for Women's Health and Wellness, HRSA. She has served on editorial boards of the Journals of Gerontology: Psychological Sciences, Psychology and Aging, Topics in Geriatric Rehabilitation, and Ethnicity and Aging.
Copeland H. Young is an Archival Specialist on a Library of Congress-funded Data Preservation Alliance for the Social Sciences project to preserve born digital data and also oversees the Murray Virtual Data Center metadata digital conversion project. He participated in the initial phase of the groundbreaking Diversity Archive and coordinated the development of the Murray's Mental Health Archive. He is the lead author of Inventory of Longitudinal Studies in the Social Sciences. He is a graduate student in the Archives Management Program at Simmons College and graduated from Harvard College. He has worked at the Henry A. Murray Archives for 18 years.