Approaching ethical reasoning in nursing research through a communitarian perspective

Approaching Ethical Reasoning in Nursing Research Through a Communitarian Perspective ELISSA DRESDEN, ND, RN,* BEVERLY J. MCELMURRY, EDD, FAAN,† AND LINDA L. MCCREARY, PHD, RN‡

Most nurse researchers are embedded in research ethics guidelines based predominantly on the ethical principles of autonomy, beneficence, and justice. They are oriented toward protecting the rights of individual research participants. However, in cross-cultural, community-based, and international projects, further examination is required of community rights, as an entity in and of itself, to acknowledge and protect the community’s rights. We suggest that communitarian philosophy is a perspective for the researcher to use in examining cross-cultural and international ethical questions. To show this assertion, dilemmas in community research are examined by using case studies and existing research ethics guidelines. Specific recommendations are offered for nursing scientists in practice, educational, and research settings seeking to balance the rights of the individual with those of the community. (Index words: Communitarian; Ethics; Community; Nursing ethics) J Prof Nurs 19:205-304, 2003. © 2003 Elsevier Inc. All rights reserved.

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URSE RESEARCHERS WORK in interdisciplinary and international collaborations to address and respond to global health challenges. In clinical, academic, and research roles, nurses confront ethical dilemmas in domestic and international settings. Globalization brings us into close contact with one another, and the need to understand different groups, cultures, and communities is ever increasing

*Postdoctoral Research Trainee in Primary Health Care, University of Illinois at Chicago College of Nursing, Chicago, IL. †Associate Dean and Professor, University of Illinois at Chicago College of Nursing, Global Health Leadership Office, Chicago, IL. ‡Postdoctoral Research Trainee in Primary Health Care, University of Illinois at Chicago College of Nursing, Chicago, IL. Supported by National Institutes of Health, National Institue of Nursing Research grant #T32 7070 (Research Training in Primary Health Care, B.J.M., program director). Address correspondence and reprint requests to Dr. McElmurry: University of Illinois at Chicago CON (M/C 802), Room 1160, 845 South Damen Ave, Chicago, IL 60612-7350. E-mail: [email protected] © 2003 Elsevier Inc. All rights reserved. 8755-7223/03/1905-0000$30.00/0 doi:10.1053/S8755-7223(03)00105-4

(McElmurry, Kim, & Al-Gaseer, 2000). Within this global village it has been recommended that nurses consider changing their ethical roles and responsibilities (Austin, 2001). The events of 9/11 have intensified attention on the role of the community in public health and nursing practice, research, and ethics (Berkowitz, 2002; Cipriano Smith & Ludwick, 2003; Garfield, Dresden, & Rafferty, 2003). As part of an ethical research team, the nurse researcher works with varied populations and cultures to understand and respond to a particular group’s needs and strengths. It is increasingly important that researchers appreciate the norms, values, and priorities of a research population to conduct well-informed, ethical research. Advances in communications and research have contributed to researchers’ increased access to the voice of the local community. Although we have learned much about how various cultures, groups, and communities function, many researchers are guided by research ethics guidelines that fail to address some important group differences and priorities (Marshall, Thomasma & Bergsma, 1994). For instance, an ethical dilemma occurs when the researcher focuses on protecting the rights and well-being of the individual research participants whereas the research population privileges the authority of the community over that of the individual. How then does the researcher proceed in a responsive and respectful manner, particularly around the process of obtaining informed consent? Frameworks that place community as the center or focus of deliberation can provide useful and necessary tools for researchers examining ethical dilemmas in balancing the protection of communities and the protection of individuals. This article presents one such philosophic framework, called communitarianism. Situating and defining the individual in a social context avoids the false separation between individuals and their community, in addition to pitting the individual protections against community protections. The need for such tools is supported by a discussion of the gaps in existing research ethics guidelines and is shown by a

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series of case studies. Also, future directions are offered for developing and implementing such community ethics research tools. Communitarianism

The philosophy and practice of communitarianism is a framework for the researcher working with populations that prioritize community needs. Although communitarianism has gained much attention in the areas of political sciences, political philosophy, history, education, and sociology, this philosophy has received less attention in the health sciences, and has been applied primarily in the realm of clinical practice (Emanuel, 1993; Emanuel & Emanuel, 1993; Moazam, 2001) and health resource allocation (Mooney, 1998). Communitarianism offers additional guidance for balancing the needs of the individual and those of the community, and to understand those that prioritize the community over the individual (Etzioni, 1993). Further, communitarianism recognizes the human being as a social being as well as an individual with a desire for autonomy, thereby establishing the importance of a balance between individual autonomy and social cohesion. As the Preamble to the Responsive Communitarian Platform states, A communitarian perspective does not dictate particular policies; rather it mandates attention to what is often ignored in contemporary policy debates: the social side of human nature; the responsibilities that must be borne by citizens, individually and collectively, in a regime of rights; the fragile ecology of families and their supporting communities (Institute for Communitarian Policy Studies, 2003). Community

Community has been defined differently in a variety of fields, such as sociology, philosophy, health sciences, psychology, and cultural studies. Social and health sciences investigators have conducted research to further our understanding of the phenomenon of community (Dworkin, 1993; MacQueen et al., 2001). The characteristics used to define communities vary from a certain physical trait or geographic locality to a set of behaviors or beliefs. Communitarians consider community as more than a population or aggregation; to be a community requires a shared relationship, beyond the household and family, in which membership is accepted and boundaries exist. Selznick (1992) states, “A group is a community to the extent that it encompasses a broad range

of activities and interests, and to the extent that participation implicates the whole person rather than segmental interests or activities” (p. 359). For communitarians, the community offers moral guidance and promise (Selznick, 1996). Communities encourage social justice, a sense of belonging, and a sharing of history. Individuals “are realized in and through communities, and...strong, healthy, morally vigorous communities are the prerequisite for strong, healthy, morally vigorous individuals” (Bellah, 1995/6, paragraph 12). Characteristics central to community include: mutuality, plurality, autonomy, participation, historicity, emphasis on identity, integration, interdependence, and reciprocity (Dresden & McElmurry, 2002). It is difficult for researchers to empirically validate the existence of a community. Working in collaboration and equal partnership with self-identified members of a community can contribute to a working definition of what constitutes a community for a particular research population. Existing research ethics guidelines do not offer comprehensive provisions on how to recognize and work at a community level.

Research Ethics Guidelines and Community Consent

In recent years, scientists and ethicists have suggested that the widely recognized and established research ethics guidelines that are based largely on Western ethical principles do not adequately attend to the role and influence of the community (Bastian, 2001; Bhutta, 2002; Callahan, 1994; Ijsselmuiden & Faden, 1999; Murray, 1994; Schuklenk, 1999; Schuklenk, 2000; Takala, 2001; Thomasma, 1995; Zion, 1995). Particularly in developing countries and resource-poor regions, ethical conflicts have occurred that reflect the importance of protecting communities in research (Callahan; Emanuel & Weijer, 2001; Murray; Weijer & Emanuel, 2000). Ethics guidelines reflect the specific time and place in which they were created. For example the Nuremberg Code (Nuremburg, Tribunal, 1948) was created largely as a response by the international community to crimes against research subjects committed by medical researchers during World War II. Guidelines often are amended to respond to changes in areas such as technology and diseases. In 1964, the World Medical Association issued the Declaration of Helsinki, building on the Nuremberg Code and adding significant regulations for medicine. Since then, there have been several amended and revised versions, the most recent one

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in 2000 (World Medical Association, 2000). Several international research ethics bodies, as well as many countries and areas, have created national or regional guidelines. The Declaration of Helsinki has influenced many international, regional, and national guidelines and codes of conduct concerning the ethics of research involving human subjects. In different settings, some guidelines have more authority than others. In 1993, the Council of International Organizations of Medical Sciences (CIOMS), in collaboration with the World Health Organization, created guidelines that supplemented the Declaration of Helsinki. The purpose of these guidelines was “to indicate how the ethical principles that should guide the conduct of biomedical research involving human subjects, as set forth in the Declaration of Helsinki, could be effectively applied, particularly in developing countries, given their socioeconomic circumstances, laws and regulations, and executive and administrative arrangements” (Council of International Organizations of Medical Sciences, 2002, Background, paragraph 2). The earliest version of this document, International ethical guidelines for biomedical research using human subjects, was the first to present international bioethical guidelines focused specifically on providing protection to research subjects in developing countries. The latest 2002 revision includes guidance on protecting communities and calls for increased consideration of the local research context (Council of International Organizations of Medical Sciences). For instance, the CIOMS guidelines emphasize the need for local and national research ethics bodies to review proposed research, even when it is funded externally. In addition, these guidelines discuss the risks to groups of people. Risks to groups of persons. Research in certain fields, such as epidemiology, genetics, or sociology, may present risks to the interests of communities, societies, or racially or ethnically defined groups. Information might be published that could stigmatize a group or expose its members to discrimination. Such information, for example, could indicate, rightly or wrongly, that the group has a higher than average prevalence of alcoholism, mental illness, or sexually transmitted disease, or is particularly susceptible to certain genetic disorders. Plans to conduct such research should be sensitive to such considerations, to the need to maintain confidentiality during and after the study, and to the need to publish the resulting data in a manner that is respectful of the interests of all concerned, or in certain circumstances not to publish them. The ethical review committee should ensure that the interests of all concerned are given due consideration; often it will be advisable to have individual consent supplemented by community consultation (Council of International

Organizations of Medical Sciences, 2002, Commentary on Guideline 8).

National research ethics guidelines are important for researchers. Researchers in the United States are guided by the Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978). This report is based on three ethical principles: justice (equal share and fairness), beneficence (the obligation to maximize benefits and minimize harms), and autonomy (respect for persons). In the United States, the orientation of bioethics corresponds to the Western emphases on individualism and personal autonomy (Beauchamp & Childress, 1994; Callahan, 1994; Childress, 2000). However, in other countries researchers may be guided by their national ethics guidelines and literature when defining ethical scientific conduct (Hyder & Nadeem, 2001). Part of understanding the perspectives of different members of an international research team entails becoming familiar with each team member’s national guidelines. Researchers working in Africa, for example could benefit from reviewing the report on the 1st AMVTN Workshop on Health Research Ethics in Africa (Rugemalila & Kilama, 2001). Conflicts can occur when the values and norms of the research population do not match those of the research team. For example, when particular communities are in need of protection because of their particular values, vulnerabilities, and situations, researchers relying on individually oriented guidelines may lack an appreciation of that ethical framework. Indeed, researchers may be unable to move beyond the research subject-researcher relationship and frame the community as a partner in research (Emanuel & Weijer, 2001). Issues that arise at the level of communities include: ●

Community consent: how does a researcher proceed when consent at a social grouping level is required to conduct research and may supercede any individual consent? ● Community discrimination: how does one conduct research when communities are at risk of being stigmatized and discriminated against because of research conducted with certain groups? ● Community benefit: How does one justify the conduct of research when the results will not benefit that particular community? For our purposes, a closer look at community consent is used to show the need for a community-oriented

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ethical framework. Although informed consent is considered one of the most important aspects of ethical research, this consideration reflects the Western focus on individual autonomy (Emanuel, Wendler, & Grady, 2000). COMMUNITY CONSENT

In many cultures, regions, and settings, important decisions such as consenting to participate in research are made by a larger body, such as the family or community, rather than by the individual. In such settings, the community consent procedures may precede or supercede that of an individual. Because most guidelines are grounded in the Western framework, which does not offer options for community consent, researchers within these settings are challenged to formulate an appropriate process to obtain participants’ informed consent. The fundamental ethical principles of respect for persons and respect for human dignity underlie the widespread approach to obtaining consent to conduct research with human subjects. When a research participant consents, s/he agrees to take part in the research and gives permission to the researchers to be included in specific research activities. For this consent to be valid in the United States, it is generally accepted that the potential research participant must (1) be informed about the nature of the research; (2) be able to understand this information; (3) agree to participate on a voluntary basis; and (4) provide explicit consent to participate in the research (Lindegger & Bull, n.d.). The four conditions listed earlier are aimed at an individual research subject and do not suggest alternatives beyond the level of the individual. Alternatives are needed and are relevant, especially for vulnerable or disadvantaged communities around the world. Although some earlier guidelines considered the four conditions to be complete, recent revisions have responded to ethical conflicts by adding to the list of four (Council for International Organizations of Medical Sciences, 2002; National Bioethics Advisory Commission, 2001). For example, Council of International Organizations of Medical Sciences (2002) guidelines add the recommendation that the potential participant be informed about “the expected benefits of the research to the community, or to society at large, or contributions to scientific knowledge” (Guideline 5). To recognize and respond to the importance of community, guidelines should anticipate community issues rather than react to specific conflicts as they arise. Researchers have found the Council of International Organizations of Medical Sciences (2002) guidelines

useful in recognizing the importance of a group differences (Mill & Ogilvie, 2002). However, obtaining community consent and involvement is not a simple process, and may involve political representational issues and cultural clashes. The CIOMS guidelines do not clarify what should be performed in a specific case. Moreover, most researchers work under specific national guidelines to which they must adhere. Many questions arise when researchers move beyond an individual framework. For example, how is a community representative chosen, and exactly who does s/he represent (Davis, 1997)? Was the representative nominated in a democratic fashion? Does this matter? As a researcher from the outside, obtaining this information often takes time, patience, and partnership. In addition, a researcher may be confronted with community consent processes that are not compatible with ethical guidelines. Consider a setting in which the male head of household provides consent for the adult women in the family or instances in which research participants consent solely because the community leader approves. Researchers may find that individuals cannot be approached to provide individual consent until community consent has been obtained. How do researchers reconcile a representative’s or group’s consent taking priority over the consent of an individual research subject? How do researchers determine and define autonomy and personal responsibility in these examples? The community consent process is not a single encounter, and the researcher must continue to involve and work in partnership with community representatives through the entire research process. Bastian (2001) states that “a meaningful role for the community in determining what is essential to enhance people’s health and their ability to exercise their rights is long overdue, both at global and local levels” (p. 1421). Including a community framework provides guidance on how to approach populations that are group oriented and/or question the benefits and risks of research at the group level. Even guidelines such as the Council of International Organizations of Medical Sciences (2002), which identify actions to ensure community benefit and respect as well as community consent customs, reflect a primacy on individual informed consent. They state that in no case “may the permission of a community leader or other authority substitute for individual informed consent” (Commentary on Guideline 4). The possibility that authority of the community is primary is not acknowledged. Researchers in areas where community consent is prioritized over all other forms of consent struggle with determining how to proceed. In

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these instances, researchers may choose to respect the authority of the community in ways that also incorporate individual consent during the research process. A closer look at several case studies provides examples of creative strategies to address community consent.

Case Studies

The case studies described later show the importance of community issues in the conduct of ethical research. Although the researchers may have planned community involvement in some instances, they encountered unexpected dilemmas when implementing the research that resulted in lessons learned about community issues. Zion (1995) describes a situation in Australia where a series of public meetings brought to light a concern of gay lobby groups. These lobby groups suggested that the use of gay men as research subjects in a human immunodeficiency virus (HIV) vaccine trial could be dangerous and unethical. Lobbyists who represented the gay community feared that participation in a vaccine trial would lead to increased HIV transmission if research subjects engaged in unsafe sexual practices under a false sense of security. These lobby groups initially sought to discourage gay men’s participation in HIV vaccine trials. This and similar instances involving the HIV vaccine trials raise the questions: Should the good of the gay community be put before the individual autonomy of gay men wishing to participate in a vaccine trial, and the potential good for future generations that will come about through the development of an efficacious vaccine? More important, should the gay community be able to protect individuals from acting on their decisions (Zion, p. 518)? The outcome of this dilemma was that the representatives of the gay community chose not to limit the autonomy and choices of potential research subjects, but to provide more information and to become more involved in the research process. The community representatives rewrote the informed consent to include specific information for this community that emphasized the only basis for participating in the vaccine trial was altruism, not personal gain. In this example, involving and respecting communities throughout the research process can enhance the overall outcome. Emphasizing a community perspective often can lead to adoption of a culturally sensitive approach. Crigger, Holcomb, and Weiss (2001) discuss issues that arose while conducting research in the aftermath of Hurricane Mitch in Honduras. They found difficulties in applying basic Western ethical standards in that

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cultural setting. The difficulties concerned confusion between the role of researchers and of aid workers, communication problems based on cultural and educational differences, and avoidance of coercion based on the power they had as researchers. As a result, when conducting research, they advocated the use of ethical multiculturalism, “which respects fundamental universal standards for research while responding to the peculiarities of different cultures” (p. 467). Their recommendations for researchers in multicultural settings include understanding and involving particular communities with which one would like to conduct research. The informed consent process should take into consideration aspects of the community such as education level, language, and dialect. In addition, Crigger et al. (2001) recommended an open dialogue between community representatives, researchers, and the research participants. Creating partnerships between the researchers and the community can facilitate more sensitive and ethical treatment of the research participants and the community. Community participation in the planning and implementation of research, particularly in resource-poor or developing areas, helps to mitigate the impact of the power and class differences between the researchers and participants. Mill and Ogilvie (2002) conducted research in Ghana using a participatory action research methodology. Understanding the importance of being sensitive to local ethical practices while adhering to universal principles, the researchers took several steps to ensure the involvement of the community during the research process. Their research explored factors that influenced Ghanaian women’s vulnerability to HIV infection. Thus, Mill and Ogilvie were sensitive to the possibility that harm could result to the participants, as individuals and as a community, as a consequence of participating in the research. The researchers highlighted the need to provide informed consent, maintain confidentiality, communicate community-related benefits of the study, and ensure community and public ownership of knowledge resulting from the study. Obtaining informed consent presented a challenge. Mill and Ogilvie (2002) found that permission obtained from officials at the health care institution, the University of Ghana, and the Ministry of Health was considered sufficient consent. However, the researchers believed that individual consent was required, particularly because the research involved disclosure of sexual behavior and was being conducted in a developing country where poverty might cause participants to be especially vulnerable to coercion. After their observations of the recruitment and informed consent process conducted with individuals, Mill and Ogilvie de-

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cided that the research participants might have agreed to participate because of feelings of obligation engendered by recruitment procedures. In this situation, three parties had separate and conflicting positions about what was required for voluntary informed consent. First, the government officials determined that individual consent was not required. Second, one of the research assistants reasoned that potential participants lacked the right to refuse to participate because the individual is obligated to consent to benefit the community and the overall field of HIV disease and prevention. Third, the primary investigators held the view that each woman must be informed fully about the study and be completely free to decide whether or not to consent to participate. It is possible that additional community-level meetings, discussions, and sharing of knowledge before conducting the research would help investigators anticipate or decrease differences and challenges in obtaining informed consent. In Swaziland, an international research team met to discuss ethical issues before conducting an evaluation study of a national community home-based care and HIV/acquired immune deficiency syndrome (AIDS) risk-reduction training program (Dresden, McCreary, & Popovich, 2003). The discussion was facilitated by a researcher particularly interested in ethical dilemmas that arise because of differences in communities, cultures, and other social groupings. Examples were given of ethical issues arising from racial, religious, and socioeconomic differences within communities in the United States. The Swaziland researchers shared their experiences with different regions and settings throughout their country. The team members analyzed several potential dilemmas concerning issues of community benefit, community consent, and community discrimination. Mutually acknowledging team members’ concerns and planning potential strategies to address the issues proved to be important steps in implementing a collaborative research project. Collaboration is an important component of successful and responsible research. While planning and implementing a multistakeholder evaluation of a national home-based care and HIV risk reduction program in Swaziland, researchers promoted collaboration with community members and representatives in addition to financial sponsors, government agencies, and private organizations. Continuous, open communication and a focus on shared goals were key factors in identifying issues that arose and in negotiating mutually agreeable solutions to ethical dilemmas. The Swaziland-based research staff stressed the importance of involving the community leaders and gaining consent from them in addition to various senior

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government officials. Before beginning any research activities, the team visited and explained the purpose of the research topic to various governmental and university stakeholders. Before visiting a district to be surveyed, researchers faxed, phoned, and spoke with local community leaders briefly to introduce the study. Additionally, researchers described the entire project to community leaders and community members through well-attended local town hall meetings. Many potential research participants attended these meetings, which gave them the opportunity to voice their questions and concerns and to see that the community leaders were involved. By obtaining permission from several levels of community leaders in each surveyed area before conducting the study, the researchers showed their respect for the values of the community and, in turn, gained greater acceptance by community members. Researchers presented their initial findings at eight community meetings attended by nearly 200 people, representing regional organizations, universities, government ministries, nongovernmental organizations, and interested community members (Dresden, McCreary, & Popovich, 2003). Discussions that arose during these meetings provided additional data on the context and implementation of the program being evaluated and enabled the researchers to place their findings in the context of the community. Issues relevant to the communities of Swaziland were discussed, for example, how this nation’s historic practices, such as polygamy, and traditional beliefs, such as bewitchment, are affecting the HIV/AIDS epidemic. In addition, the community meetings provided the regional and larger communities with a sense of ownership and responsibility toward the HIV/AIDS epidemic in Swaziland. By remaining aware of the need to place the community at the center of the research collaboration, the research team responded to the community’s needs, values, and norms and completed a successful study.

Tools from Communitarianism

Examining communitarian ethical frameworks offers additional tools for those conducting research with populations that privilege notions of community over the individual. Briefly, communitarianism is a “view that emphasizes the centrality of contextual influences on the individual and sees the community as non-reducible, or as more than the sum of its parts” (Dresden & McElmurry, 2002). The individual is a social entity, inseparable from the community in which s/he is em-

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bedded. Factors such as tradition, culture, interpersonal relations, geography, history, and family significantly influence and are part of the individual. When working within a communitarian framework, one may consider that “the way to do ethics is not to try to deduce and apply universally valid fundamental principles, but to interpret and refine values that are immanent in the ways of the lives of really living groups— societies, communities. This way, ethical principles can be accepted and owned by social actors” (Frazer, 1999, p. 21). Communitarians place importance on the social commitment of we, the community. A community member, by definition, contributes to and participates in the community. Emphasis is placed on community duties rather than individual rights, as the “duties and responsibilities of citizens to each other and to the community should balance individual rights” (Frazer, 1999, p. 37). For communitarians, there is a common good toward which the community strives. They regard the community as a setting that promotes social justice and individual moral development. Scholars have offered suggestions on how to integrate communitarianism and community-focused frameworks into research ethics. Emanuel and Weijer (2001) examined the Western-principled approach, suggesting that the concept of community could be added as a fourth ethical principle. Adding a separate principle would “acknowledge that the community is more than the sum of individual values and interests; the community has values and interests in itself” (p. 11). The International Centre for Nursing Ethics has proposed a fourth principle of “respect for community,” recognizing the limits of the individualistic approach, and noting that this principle is a guide for research in all countries, and not as a “supplemental guide for considering research protocols only in nonwestern countries” (Olsen, 2003, p. 18). Callahan (1994) has put forth “cultural bioethics” as a type of communitarian bioethics that would “begin with an analysis of the way in which culture shapes individual choices by creating the context and limits of those choices” (p. 29). In other words, it is important not only to reflect on what decisions need to be made, but what kind of context exists and shapes the environment from which the decisions emerge. Further, it is important to ask whether we are satisfied with the environmental context for decision making or the actual decision or both. Researchers can integrate these notions by viewing the research community’s decisionmaking processes as an active participant of the wider societal and environmental context. Blending cultural judgment with personal judgment, Callahan suggests

that one must go beyond personal choice to address society’s compass. An introductory strategy for the Western researcher grounded in the principled approach is to focus on the community context when reviewing the principles, moving beyond an individual-focused framework. The principles then are applied to the protection of communities, recognizing that the individuals involved in research cannot be separated from their community and social contexts. Although this would not truly center the community as prime, it is a place to begin for those who conduct research with populations that place importance on community. This strategy is described further later. BENEFICENCE

In addition to balancing risks and benefits to individuals in research, investigators guided by a communitarian framework prioritize concern for the potential for harm to communities. Potential harm might be caused by stigmatizing effects related to the research topic, such as HIV/AIDS or genetic disease patterning. Communitarian-guided researchers are obligated to discover whether potential harms exist with a particular research topic and research populations, and if the topic has the potential to affect not only individuals, but also communities. The harm involved may be subtle; determining how to balance the risks and benefits might require much consultation and discussion with various community leaders and representatives. JUSTICE

Considering justice from a communitarian perspective moves beyond the tasks of fairly selecting subjects and distributing the benefits and costs of research. Communitarian ethical guidelines promote using a community focus and participatory approaches to examine issues related to justice for the larger community, such as whether proposed research is relevant to the community or whether the community, having borne the risks of participating in the research, will benefit from the results. Community participation to promote justice in the research process would include just and equitable involvement by communities in the design and evaluation of the research. The National Bioethics Advisory Commission (2001) document, Ethical and Policy Issues in International Research, offers suggestions for community involvement that fit within a communitarian approach to research ethics. For example, how does one resolve issues introduced when clinical trial research is conducted in a community that, after the study, will have little or no access to the

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pharmaceuticals that were tested in the intervention (Mabunda, 2001)? RESPECT FOR PERSONS (AUTONOMY)

The communitarian approach expands the principle of respect for persons to include these persons as members of a community, not merely as isolated individuals. Moreover, communitarian ethics includes respect for the autonomy, or self-determination, of communities, so that the researcher has “an obligation to respect the values and interests of the community in research, and, whenever possible, to protect the community from harm” (Emanuel & Weijer, 2001, p. 10). When a community is thought to have values and interests beyond the sum of its parts, then there is another entity, beyond the individual, that requires protection. There are many advantages to the researcher in considering a community approach. An understanding of how the community influences individual research subjects and decision making provides insight into the norms, values, and behaviors of the individuals who participate in research. Emanuel and Weijer (2001) state, “An individual’s actions, desires, and goals are only comprehensible, and for that matter possible, within the context of a larger community” (p. 7). Particularly if the community and/or culture being studied are quite different from those of the researcher, an examination of individual embeddedness provides an enriched, multilayered view that does not atomize, or reduce the research subject. Future Directions

The formal education of researchers and students on the importance of research ethics must explicitly include consideration of the community’s interests as well as those of the individual. Nurse educators have a responsibility to provide students with multiple viewpoints that encourage appreciation of social and cultural differences and commonalities (Kikuchi, 1996). Ethics content should reflect a balance of cognitive, affective, and technical skill development, stimulating “intellectual and personal growth through values clarification” (Snider, 2001, p. 5). Furthermore, inclusion of critical decision-making processes in ethics education includes values clarification. Although some investigators have made a call to collaborate on a plan for competencies in research ethics (Ketefian, 1999), others have established working groups for the study of ethical issues in international nursing research (Olsen, 2003). Teaching research ethics grounded in the complexities and commonalities of community can con-

tribute to richer and more responsive ethics education. Further examination of nursing curricula for community ethics would provide guidance in assessing the gaps in existing curricula Although formalized courses may not yet be available at colleges of nursing, there are complementary mechanisms that have been designed to address some of the ethical dilemmas described earlier. Colleges of nursing have faculty and students from diverse backgrounds and experiences who can share differing perspectives on existing research ethics guidelines. To supplement formal education, some institutions have developed tools to train investigators conducting research in transcultural and transnational settings. The University of Illinois at Chicago College of Nursing has developed a Curriculum on International Research Ethics for the Minority International Research Training Program (McElmurry, Misner, Savage, & Dresden, 2002). This curriculum is used for Minority International Research Training Program scholars and others interested in international research ethics. It is divided into four modules: two modules provide grounding in health research ethics and scientific integrity, and the other two remaining modules focus on concepts of community and culture. Family Health International (2001) has an on-line research ethics training curriculum that discusses some issues related to community and vulnerable populations. The Harvard School of Public Health (n.d.) offers on-line case studies on ethical issues in international health research. Along with the need to educate researchers there is the need to orient the ethics review board members to community interests and protections. Formal education focusing on the community has yet to be integrated widely into institutional review board training in U.S. health sciences institutions (Benatar & Singer, 2000). However, recent requirements from the U.S. Department of Health and Human Services stress the importance of such education for international colleagues/collaborators. At the global level, the attention to the development of local review committees for the protection from research risks is a means to ensure representation of local community views. Yet it is important to note that the inclusion of local ethics review committees may not always reflect the local views. Current U.S. government requirements also may perpetuate the individual orientation of research ethics. All institutions conducting research projects that receive financial support from the U.S. Department of Health and Human Services are now encouraged to obtain a Federal Wide Assurance (FWA) designation, which formalizes the institution’s commitment to pro-

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tect human subjects (Division of Human Subjects Protection, OPRR, 1999). Both domestic and international institutions are required to obtain FWA status, and to provide a statement of guiding principles, such as the Belmont Report or the Declaration of Helsinki. If other guidelines are used, they must be submitted with the FWA application (DHHS OHRP, 2002). This process of adhering to guidelines similar to U.S. standards to receive the FWA may promote the use of the Belmont Report over locally developed guidelines. However, regardless of the guidelines used, ethical investigators must look beyond the FWA to become familiar with local community values. As part of an international nursing community in-

creasingly aware and responsive to issues raised in international research, U.S. colleges of nursing need to engage in this ongoing dialogue on scientific integrity. Funding for international research ethics resources such as graduate programs, establishment of ethics review boards, and courses has facilitated the establishment of programs in the United States, Latin America, South Africa, and Canada (SciDevNet, n.d.). Nursing scientists in the United States will discover much and improve their programs of study by recognizing and participating in transcultural and transnational ethics discussions. It is through discussions such as these that the importance and influence of community perspectives will emerge.

References Austin, W. (2001). Nursing ethics in an era of globalization. Advances in Nursing Science, 24, 1-18. Bastian, H. (2001). Gains and losses for rights of consumer and research participants. BMJ, 322, 14191421. Beauchamp, T. L., & Childress, J (1994). Principles of biomedical ethics). New York: Oxford University Press. Bellah R. N. (1995/6). Community properly understood: A defense of “democratic communitarianism” [On-line]. The Responsive Community, 6. Available: www.gwu.edu/ ⬃icps/bellah.html. Accessed: May 21, 2003. Benatar, S. R., & Singer, P. A. (2000). A new look at international research ethics. BMJ, 321, 824-826. Berkowitz B. (2002). Public health nursing practice: Aftermath of September 11, 2001 [On-line]. Online Journal of Issues in Nursing. Available: www.nursingworld.org/ojin/ topic19/tpc19_4.htm. Accessed: May 21, 2003. Bhutta, Z. A. (2002). Ethics in international health research: A perspective from the developing world. Bulletin of the World Health Organization, 80, 114-120. Callahan, D. (1994). Bioethics: Private choice and common good. Hastings Center Report, 24, 28-31. Childress, J. F. (2000). Nuremberg’s legacy: Some ethical reflections. Perspectives in Biology and Medicine, 43, 347361. Cipriano Smith, M., Ludwick R. (2003). Ethics and terrorism: September 11, 2001 and its aftermath [On-line]. Online Journal of Issues in Nursing. Available: www. nursingworld.org/ojin/ethicol/ethics_11.htm. Accessed: May 21, 2003. Crigger, N. J., Holcomb, L., & Weiss, J. (2001). Fundamentalism, multiculturalism and problems of conducting research with populations in developing nations. Nursing Ethics, 8, 459-468. Council for International Organizations of Medical Sciences. (2002). International ethical guidelines for biomedical research involving human subjects. Available: www. cioms.ch/frame_guidelines_nov_2002.htm. Accessed: May 21, 2003. Davis, A. J. (1997). Selected ethical issues in planned social change and primary health care. Nursing Ethics, 4, 239-245.

U.S. Department of Health and Human Services, Office for Human Research Protections. (2002). Step by step instructions for filing a Federalwide Assurance for International (non U.S.) institutions [On-line]. Available: ohrp.osophs. dhhs.gov/humansubjects/assurance/ifilasuri.htm. Accessed: May 21, 2003. Division of Human Subjects Research, Office for Protection from Research Risks. (1999). Engagement of institutions in research [On-line]. Available: ohrp.osophs.dhhs.gov/ humansubjects/assurance/engage.htm. Accessed: May 21, 2003. Dresden, E., McCreary, L. M., & Popovich, J. (2003). Evaluation of the Swaziland Rural Health Initiative: A training program on community home based care and HIV/AIDS risk reduction). Chicago: Author. Dresden, E., & McElmurry, B. J. (2002). Concepts of community: Communitarian ethics case example. In B. J. McElmurry, S. J. Misner, T. Savage, & E. Dresden (Eds.), Curriculum on international research ethics. Chicago: Author. Dworkin, R. (1993). Integrity. In M. Fisk (Ed.), Justice. Atlantic Highlands, NJ: Humanities Press. Emanuel, E. J. (1993). A communitarian health-care package. The Responsive Community, 3, 49-55. Emanuel, L. I., & Emanuel, E. J. (1993). Decisions at the end of life guided by communities of patients. Hastings Center Report, 23, 6-14. Emanuel E. J., Weijer C. (2001, June). Protecting communities in research: From a new principle to rational protections. Presented at the meeting of the National Institutes of Health and the George Washington University Institute for Communitarian Policy Studies, Washington, DC. Emanuel, E. J., Wendler, D., & Grady, C. (2000). What makes clinical research ethical? JAMA, 283, 2701-2710. Etzioni, A (1993). The spirit of community: Rights, responsibilities and the communitarian agenda). New York: Crown Publishers, Inc.. Family Health International. (2001). Research ethics training curriculum [On-line]. Available: www.fhi.org/en/topics/ ethics/curriculum/contents.htm. Accessed: May 21, 2003. Frazer, E. (1999). The problems of communitarian politics). Oxford: Oxford University Press. Garfield R., Dresden E., Rafferty A. M. (in press). The

304

evolving role of nurses in terrorism and war. American Journal of Infection Control. Harvard School of Public Health. (n.d.). Ethical issues in international health research: Course info [On-line]. Accessed: May 21, 2003. Available: www.hsph.harvard.edu/ bioethics/). Hyder, A. A., & Nadeem, S. (2001). Health ethics in Pakistan: A literature review of its present state. Journal of Health, Population and Nutrition, 19, 6-11. Ijsselmuiden, C., & Faden, R. (1999). Research and informed consent in Africa—another look. In J. M. Mann, S. Gruskin, M. A. Grodin, & G. J. Annas (Eds.), Health and human rights (pp. 363-372). New York: Routledge. Institute for Communitarian Policy Studies. (2003). Rights and responsibilities [On-line]. Available: www. gwu.edu/⬃icps/rights.html. Accessed: May 21, 2003. Ketefian, S. (1999). Ethics content in nursing education. Journal of Professional Nursing, 15, 138. Kikuchi, J. F. (1996). Multicultural ethics in nursing education: A potential threat to responsible practice. Journal of Professional Nursing, 12, 159-165. Lindegger G., Bull S. (n.d.). Ensuring valid consent in a developing country context [On-line]. SciDevNet. Available: www.scidev.net/dossiers/ethics/erpolicy_lindegger_ bull.html. Accessed: May 21, 2003. Mabunda, G. (2001). Ethical issues in HIV research in poor countries. Journal of Nursing Scholarship, 33, 111-114. MacQueen, K. M., McLellan, E., Metzger, D. S., Kegeles, S., Strauss, R. P., Scotti, R., Blanchard, L., & Trotter, R. T. (2001). What is community? An evidence-based definition for participatory public health. American Journal of Public Health, 91, 1929-1938. Marshall, P. A., Thomasma, D. C., & Bergsma, J. (1994). Intercultural reasoning: The challenge for international bioethics. Cambridge Quarterly of Healthcare Ethics, 3, 321-328. McElmurry, B. J., Kim, S., & Al-Gaseer, N. (2000). Global nursing leadership: A professional imperative. Seminars for Nurse Managers, 8, 232-238. McElmurry, B. J., Misner, S. J., Savage, T., & Dresden, E (2002). Curriculum on international research ethics. Chicago: Author. Mill, J. E., & Ogilvie, L. D. (2002). Ethical decision making in international nursing research. Qualitative Health Research, 12, 807-815. Moazam, F. (2001). Reconciling patients’ rights and God’s wisdom: Medical decision making in Pakistan. The Responsive Community, 11, 43-51. Mooney, G. (1998). “Communitarian claims” as an ethical basis for allocating health care resources. Social Science and Medicine, 47, 1171-1180. Murray, T. H. (1994). Communities need more than autonomy. Hastings Center Report, 24, 32-33. National Bioethics Advisory Commission (2001). Ethical

DRESDEN, MCELMURRY, AND MCCREARY

policy issues in international research: Clinical trials in developing countries. Vol I. Report and recommendations of the National Bioethics Advisory Commission. Bethesda, MD: National Bioethics Advisory Commission. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1978). The Belmont report: Ethical guidelines for the protection of human subjects. Washington, DC: U.S. Government Printing Office, DHEW publication no. (OS) 78-0012. Nuremberg Tribunal (1948). Trials of war criminals before the military tribunals. The medical case. Washington, DC: U.S. Government Printing Office. Olsen, D. P. (2003). Ethical considerations in international nursing research: A report from the International Centre for Nursing Ethics. Nursing Ethics, 10, 122-137. Rugemalila J. B., Kilama W. L. (2001). Report on the 1st AMTVN workshop on health research ethics in Africa [Online]. Available: www.amvtn.org/Workshops/wrk1hre.pdf. Accessed: May 21, 2003. Schuklenk U. (1999). International research ethics guidelines under threat [On-line]. Available: www.healthlibrary. com/reading/ethics/july-sept99/threat.htm. Accessed: May 21, 2003. Schuklenk, U. (2000). Protecting the vulnerable: Testing times for clinical research ethics. Social Science & Medicine, 51, 969-977. SciDevNet. (n.d.). Ethics of research: Training resources [On-line]. Available: www.scidev.net/dossiers/ethics/ ertraining.html. Accessed: May 21, 2003. Selznick, P (1992). The moral commonwealth: Social theory and the promise of community. Berkeley, CA: University of California Press. Selznick P. (1996). Social justice: A communitarian perspective [On-line]. The Responsive Community, 6. Available: www.gwu.edu/⬃icps/selznick.html. Accessed: March 21, 2003. Snider, J. (2001). Ethics instruction in nursing education. Journal of Professional Nursing, 17, 5. Takala, T. (2001). What is wrong with global bioethics? On the limitations of the four principles approach. Cambridge Quarterly of Healthcare Ethics, 10, 72-77. Thomasma, D. C. (1995). Beyond autonomy to the person coping with illness. Cambridge Quarterly of Healthcare Ethics, 4, 12-22. Weijer, C., & Emanuel, E. J. (2000). Protecting communities in research: A rational strategy for the development of protections. Science, 289, 1142-1144. World Medical Association (2000). World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. Ferney-Voltaire: WMA. Zion, D. (1995). Can communities protect autonomy? Ethical dilemmas in HIV preventative drug trials. Cambridge Quarterly of Healthcare Ethics, 4, 516-523.