When developing the agenda for this session, the Planning Committee had two questions in mind:
- How might one design international research projects while being cognizant of cultural distinctions, mannerisms and sensitivities?
- What cultural and ethical issues should be taken into consideration when first setting out to design a research project that involves international participants?
Two speakers addressed these questions in a session moderated by Susan Sauer Sloan, GUIRR Director. Frederick Leong, Professor of Psychology and Psychiatry and Director of the Consortium for Multicultural Psychology Research at Michigan State University, discussed how to move toward culturally responsible conduct of international research. Edward Trimble, Director of the Center for Global Health at the National Cancer Institute, spoke about why culture matters in cancer research.
Presenter: Frederick Leong, Professor of Psychology and Psychiatry and Director of the Consortium for Multicultural Psychology Research at Michigan State University
Out of the 164 cited definitions of culture defined in a 1952 book on the subject (Kluckhohn, 1952), Frederick Leong explained the two that convey what many anthropologists would say are central: that culture is an abstraction from behavior and that it is very complex. Regarding the responsible conduct of research in the international arena, Leong began with this central idea and made the assumption that humans are cultural beings and that the scientific
community functions as a culture that can be studied from a psychological perspective. He emphasized the importance in such studies of being aware of the problem of ethnocentrism—the natural tendency of using one’s own culture as a standard for evaluating others—and to consider the advantages and disadvantages of the universalist and culture-specific approaches to research.
Leong then noted that while the American Psychological Association (APA) has a code of ethics that contains guidelines regarding research, these guidelines do not specifically address international and cross-cultural research. For example, the APA code of ethics has specific standards and guidelines regarding informed consent, but the guidelines say nothing about what to do when there are cross-cultural encounters with people who have different communication styles and expectations. Leong made the point that “there are limitations to our ethical codes. The behavioral specificity of these ethical codes ignores a range of ethical challenges when cross-cultural international research is conducted by American psychologists in other countries.”
He commented, too, that ethical codes are not created in vacuums but are contextualized and reflect the culture of the country in which these codes are developed. “We know very little about the cultural conflicts and ethical dilemmas that occur when culture-specific ethical codes are transported across cultures in international psychological research,” said Leong. “More likely than not, these codes lack the flexibility to deal with the complexities of the different cultural contexts. A behaviorally-based ethical system is not likely to be responsive to these cross-cultural conflicts that are often subtle and invisible to many American psychologists,” he added.
Leong then listed some of the ethical challenges in international research (Leong, 2011):
- How do we reconcile Institutional Review Board (IRB)1 requirements of written consent with research societies that possess no written language?
- How do we reconcile one society’s values concerning bribery with another society’s cultural expectations that gifts will be offered when seeking access to samples?
- What constitutes excessive or inappropriate financial inducement in developing countries, where poverty rates are high?
1In the United States, ethical reviews of human subjects research are conducted by institutional review boards (IRBs). However, in many other countries the ethical review of human subjects research is conducted by a review board that is not housed within the research institution. Therefore, the term research ethics committee (REC) is more widely used internationally. Both IRBs and RECs serve the same function.
- Who monitors the potential abuse of participants in developing countries in order to advance careers of psychologists from more developed countries?
- How do we deal with the myth of uniformity that assumes that equal treatment is always fair treatment given the differential research infrastructures present in different countries?
There are potential solutions to address the limitations of national ethical codes and guidance that can be provided for culturally responsible conduct of international research. One solution that Leong recommends is adopting the Universal Declaration of Ethical Principles for Psychologists and the APA’s Resolution on Culture and Gender Awareness in International Psychology. The Universal Declaration was developed by the International Union of Psychological Science (IUPsyS) and the International Association of Applied Psychology and it establishes a framework based on four principles (IUPsyS, 2008): (1) respect for the dignity of all human beings, (2) competent caring for the well-being of others, (3) integrity, and (4) professional and scientific responsibility to society. The APA’s Resolution (APA, 2004) is based on the fact that 60 percent of the world’s psychologists now live outside of the United States and that they have generated perspectives, methods, and practices that correspond to the needs of the people in their societies. The Resolution calls for more research on the role that cultural ideologies have in the experience of women and men across and within countries on the basis of gender identity, sexual orientation, ethnicity, class, age, disabilities, and religion. It also advocates for more collaborative research partnerships with colleagues from diverse cultures and countries that can lead to mutually beneficial dialogues and learning opportunities. Finally, the Resolution encourages psychologists to gain an understanding of the experiences of individuals in diverse cultures and their points of view, to value a pluralistic world view, and to become aware of and understand how systems of power hierarchies may influence the privileges, advantages, and rewards that usually accrue by virtue of placement and power (APA, 2004).
There are also emerging solutions, said Leong, that he believes are promising. One such solution is the International Competencies for Scientists and Practitioners, which derives from the APA’s Resolution and defines and measures international competencies as an extension of the multicultural competencies movement in minority mental health services. This movement was launched over three decades ago by the APA’s counseling division when it developed a position paper on the topic of cross-cultural competencies as they relate to more culturally competent diagnostic services for minorities (Sue, 1982). That model contains three conditions that Leong said are valuable for international competencies: awareness of how a counselor’s own cultural background may bias or skew his or her perception of the client’s experiences
and problems that arise from the client’s different cultural background; knowledge about other cultures; and skills that a counselor can acquire to work effectively with culturally different clients.
From this model for cross-cultural competencies, Leong and his colleagues created a model for developing international competencies in psychology that he believes can provide a conceptual framework for guiding the increasing internationalization of psychology. Leong’s model proposes that the development of international or cross-cultural competencies in psychology should begin with a multicultural mindset that includes a deep understanding of the contextual basis of human behavior and that requires a cross-cultural and comparative perspective (Leong, 2000). The opposite stance, explained Leong, is ethnocentrism, “where we assume that our culture’s way of thinking, feeling, and behaving is the best and correct one regardless of context.” He added that ethnocentrism is a common and natural human tendency and therefore requires mindful efforts to overcome.
One aspect of this model is that the psychologist uses cross-cultural knowledge, skills, and abilities related to differential contexts in order to accommodate the significant differences that would otherwise limit or hinder the relevance and effectiveness of his or her international activities. In the development of international competencies for research and practice, an evidence-based approach that uses empirically-based cross-cultural theoretical models is important. Leong briefly reviewed a few such studies to illustrate the importance of acquiring knowledge regarding cultural values to guide ethical research practices. The utility of these models is in explaining how conflicting values can create ethical problems when conducting cross-cultural research.
In his book The Interpretation of Cultures, anthropologist Clifford Geertz made an important distinction between thick versus thin descriptions of cultures (Geertz, 1977), and Leong subscribes to the view that international competencies consisting of thick descriptions of culture and an understanding of the deep structure of cultural values and beliefs will be the way forward toward the culturally responsible conduct of international research. He ended his presentation by issuing a call to action for the APA Committee on International Relations in Psychology to begin to assess and evaluate the nature and extent of ethical problems in conducting cross-cultural research among its members while guided by the Resolution on Culture and Gender Awareness in International Psychology and the Universal Declaration of Ethical Principles (Leong & Lyons, 2011 and APA, 2004). To respond to that call, Leong also commented that there is a need to launch a program of research aimed at identifying the key international competencies of awareness, knowledge, and skills in research and practice in order to meet the challenges of the increasing internationalization of our scientific enterprise.
Presenter: Edward Trimble, Director of the Center for Global Health at the National Cancer Institute (NCI)
Edward Trimble indicated that he had recently counted 15 bilateral international research agreements that he is working on or developing to tackle the growing incidence of cancer outside of the United States. He noted that more than 60 percent of the world’s cancers occur in the developing world, with that percentage slated to rise to upwards of 70 percent over the next two decades. As a result of the pressing need that arises from the preponderance of cancer occurring in those nations least able to afford the burden of treating and caring for their citizens who develop cancer, Trimble said, “we need to understand the differences in how cancer arises and the response to treatment across different countries and different patient populations. We need to share expertise, we need to build capacity for research, and we need to develop new ways to prevent, to diagnose, to treat, and to palliate cancer as soon as possible. So we need to overcome any differences related to red tape or culture as quickly as possible to get this done.” And while there has been tremendous awareness of the prevalence of infectious diseases in the less developed world, that same awareness has not been the case concerning non-communicable diseases such as cancer.
Trimble said one important aspect of culture related to cancer is its influence at the personal, family, and community levels, at the level of local health systems and health care providers, and at the national level as it relates to support for research and for engaging in research with investigators from the developed world. At the individual, family, and community levels, there needs to be a community understanding of the need for health research and the structure of health research, explained Trimble. One advantage that American researchers have in this realm is that the United States is itself multicultural and the cancer research community has learned how to interact with community leaders. “In many cases, we bring that awareness when we do research in partnership with colleagues outside of the U.S.,” said Trimble.
One area where improvement is needed, he said, is learning how to explain the risks and benefits associated with research to individuals. “It drives me crazy when I have to talk to my own patients and give them a 20-page, single spaced informed consent form,” he said. To him, this represents a failure to bridge the legal culture with the culture of the individual and the health care provider who would “much prefer to have a two-page document in bold, 16-point type.” Also needed, said Trimble, is a health care community that puts a premium on research. “Clearly, we need to make sure that doctors and nurses and other members of the healthcare team understand the importance of re-
search and understand how to do it. This needs to be part of the medical culture,” he said. It has to start with the institutional leadership’s support for research in a way that engages all of the communities—each with its own culture—that must be involved for research to have its biggest impact, Trimble explained.
In the same way that psychologists have ethical frameworks, so too does the international research community. These frameworks, which can have both national and international scope, are largely in sync with one another. What does vary, said Trimble, is the amount of paperwork needed to satisfy the different frameworks and the timeliness of the review process. In some cases, he said, the time from submission of a research proposal to its approval by a national review board takes so long that the scientific question that was to be addressed by the research is no longer important. This is also a U.S. problem, Trimble admitted, and the National Cancer Institute has revamped its own processes to make sure that it can start trials quickly. He cited France as an example of a country that has refined its processes to speed clinical trial approvals. “France has managed to change the culture to emphasize the importance of timely review. They are not overlooking patient protection but making sure that the science proceeds in a timely way,” said Trimble.
Trimble noted the potential value of the Bamako Call to Action for Research in Health, which was issued in 2008 (WHO, 2008). This document, issued by ministries of health, science and technology, education, foreign affairs, and international cooperation from 53 countries, urged nations to mobilize all relevant sectors of society to work together to find needed solutions to the world’s important health care issues. The Call to Action also recommended that governments and international development agencies allocate specific resources to health research priorities. The culture change needed to realize these goals is still underway, said Trimble.
As an example of what happens when the local culture does not support these goals, he cited the clinical trials crisis in India. In 2013, the Indian government rolled out new clinical trials regulations that were intended to provide greater protection to clinical trial participants. While many of the regulations were reasonable, a few less thoroughly developed regulations caused clinical trials in India to come to a halt: a requirement that compensation be paid to patients who were not fully cured during the trial, a ban on the use of placebos in clinical trials, and a requirement to pay all medical costs for a patient who sustained injury or illness during a clinical trial without regard to whether said injury or illness was related to the clinical trial (Pais, 2013). “There was not adequate support from elsewhere in society to say that clinical research is critical and needs to continue,” said Trimble.
In his closing remarks, Trimble listed a few examples of research collaborations in cancer where there has been a significant amount of effort put into
figuring out how to bridge nations and cultures. The International Cancer Genome Consortium is one such example, and it is designed to identify genetic and epigenetic changes in 50 different tumor types of clinical importance across the planet. This consortium involves laboratories in 14 countries. The NCI has also started an international rare disease research consortium in conjunction with Canada and the European Union, and multinational clinical trials in breast cancer have been going for over 20 years. The NCI has also created a large clinical trials network that, while based primarily in the United States and Canada, also involves investigators and patients in South Africa, Peru, China, Japan, and Korea. Trimble additionally cited the strong culture of partnership that NCI has established in the United States among industry and academia, including the development of model agreements for collaborations across government, industry, and academia.
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