Culture Matters: International Research Collaboration in a Changing World: Summary of a Workshop (2014)

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2    Designing Projects with Culture in Mind    When developing the agenda for this session, the Planning Committee had  two questions in mind:     How might one design international research projects while being cog‐ nizant 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 interna‐ tional participants?    Two speakers addressed these questions in a session moderated by Susan  Sauer Sloan, GUIRR Director. Frederick Leong, Professor of Psychology and Psy‐ chiatry and Director of the Consortium for Multicultural Psychology Research at  Michigan  State  University, discussed  how  to  move  toward  culturally  responsi‐ ble  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.     2.1 CONDUCTING INTERNATIONAL RESEARCH IN   A CULTURALLY RESPONSIBLE MANNER    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  7  

8                   Culture Matters: International Research Collaboration in a Changing World  community functions as a culture that can be studied from a psychological per‐ spective. 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  disad‐ vantages 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  guide‐ lines  do  not  specifically  address  international  and  cross‐cultural  research.  For  example, the APA code of ethics has specific standards and guidelines regard‐ ing  informed  consent,  but  the  guidelines  say  nothing  about  what  to  do  when  there are cross‐cultural encounters with people who have different communi‐ cation  styles  and  expectations.  Leong  made  the  point  that  “there  are  limita‐ tions to our ethical codes. The behavioral specificity of these ethical codes ig‐ nores 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 dilem‐ mas that occur when culture‐specific ethical codes are transported across cul‐ tures  in  international  psychological  research,”  said  Leong.  “More  likely  than  not, these codes lack the flexibility to deal with the complexities of the differ‐ ent  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)  requirements of  1 written  consent  with  research  societies  that  possess  no  written  lan‐ guage?   How  do  we  reconcile  one  society’s  values  concerning  bribery  with  an‐ other  society’s  cultural  expectations  that  gifts  will  be  offered  when  seeking access to samples?   What constitutes excessive or inappropriate financial inducement in de‐ veloping countries, where poverty rates are high?                                                               1 In 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.  

Designing Projects with Culture in Mind 9 • Who monitors the potential abuse of participants in developing coun- tries 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 infra- structures 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 Reso- lution on Culture and Gender Awareness in International Psychology. The Uni- versal 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 oth- ers, (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, ethnici- ty, 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 expe- riences 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 promis- ing. 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 

10                   Culture Matters: International Research Collaboration in a Changing World  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 in‐ ternationalization  of  psychology.  Leong’s  model  proposes  that  the  develop‐ ment  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  re‐ quires 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  ac‐ commodate the significant differences that would otherwise limit or hinder the  relevance and effectiveness of his or her international activities. In the devel‐ opment 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  im‐ portance of acquiring knowledge regarding cultural values to guide ethical re‐ search  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  cul‐ tures (Geertz, 1977), and Leong subscribes to the view that international com‐ petencies  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  Interna‐ tional  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 internationaliza‐ tion of our scientific enterprise.       

Designing Projects with Culture in Mind  11  2.2 WHY CULTURE MATTERS IN CANCER RESEARCH    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 inter‐ national 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 pre‐ vent,  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 influ‐ ence 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 sup‐ port for research and for engaging in research with investigators from the de‐ veloped world. At the individual, family, and community levels, there needs to  be a community understanding of the need for health research and the struc‐ ture  of  health  research,  explained  Trimble.  One  advantage  that  American  re‐ searchers 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 part‐ nership with colleagues outside of the U.S.,” said Trimble.   One  area  where  improvement  is  needed,  he  said,  is  learning  how  to  ex‐ plain  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, sin‐ gle 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‐ 

12                   Culture Matters: International Research Collaboration in a Changing World  search and understand how to do it. This needs to be part of the medical cul‐ ture,” he said. It has to start with the institutional leadership’s support for re‐ search  in  a  way  that  engages  all  of  the  communities—each  with  its  own  cul‐ ture—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 dif‐ ferent 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 na‐ tional  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 pro‐ cesses to make sure that it can start trials quickly. He cited France as an exam‐ ple 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  Re‐ search 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 rele‐ vant 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  gov‐ ernments  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  gov‐ ernment 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 criti‐ cal and needs to continue,” said Trimble.  In his closing remarks, Trimble listed a few examples of research collabora‐ tions  in  cancer  where  there  has  been  a  significant  amount  of  effort  put  into  

Designing Projects with Culture in Mind 13 figuring out how to bridge nations and cultures. The International Cancer Ge- nome 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 con- junction 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 gov- ernment, industry, and academia. REFERENCES APA (American Psychological Association). 2004. Resolution on Culture and Gender Awareness in International Psychology. Available at http://www.apa.org/about/ policy/gender.aspx (accessed 3/22/2014). Geertz, Clifford. 1973. The Interpretation of Cultures. New York, NY: Basic Books. IUPsyS (International Union of Psychological Science). 2008. Universal Declaration of Ethical Principles for Psychologists. Available at http://www.iupsys.net/about/gove rnance/universal-declaration-of-ethical-principles-for-psychologists.html (accessed 3/22/2014). Kroeber, A. L., Kluckhohn, Clyde, and Untereiner, Wayne, 1952. Culture: A Critical Re- view of Concepts and Definitions. New York, NY: Vintage Books. Leong, Frederick T. L. and Hartung, Paul J. 2000. Cross-Cultural Career Assessment: Re- view and Prospects for the New Millennium. Journal of Career Assessment 8:391- 401. Leong, Frederick T. L. and Lyons, Brent. 2011. Ethical Challenges for Cross-Cultural Re- search Conducted by Psychologists from the United States. Ethics and Behavior 20(3):250-264. Pais, Prem. 2013. Clinical trials in India in a crisis: Does it matter? Express Pharma. Avail- able at http://pharma.financialexpress.com/sections/res/2451-clinical-trials-in-india- in-a-crisis-does-it-matter (accessed 7/23/2014). Sue, Derald W., Bernier, Y., Durran, A., Feinberg, L., Pedersen, P. B., Smith, E. J., and Vasquez-Nuttal, Ena. 1982. Position Paper: Cross-cultural Counseling Competen- cies. The Counseling Psychologist 10(1):45-52. Useem, John and Useem, Ruth. 1963. Human Organizations 22(3). WHO (World Health Organization). 2008. Bamako Call to Action urges new approach to research for health. Available at http://www.who.int/rpc/news/bamako_call_to_ action/en/ (accessed 8/15/2014).