ABSTRACT
As academic institutions expand their engagement in international health research, it is important for scientists to understand that there are special complexities and challenges involved. In some cases, these require new perspectives and ways of interaction quite different from those used in domestic academic and research settings. Fortunately, there are also resources and allies within and outside the scientific community that can help in this endeavor. In the past, knowledge of how best to undertake international research was gained largely through long experience and usually by trial and error. When few scientists were engaged internationally, this approach seemed to work. Even when mistakes were made, their impact was limited. Now, with so many engaged in international academic and research activities, it is increasingly important to share and use optimal approaches to advance scientific progress while avoiding unnecessary controversy, counterproductive practices, and harm to research partners. In the twenty-first century, scientists and institutions that support international research are being asked to find answers to some of the most complex questions that have faced humankind. Compelling questions related to climate change and energy, a healthy environment, emerging and re-emerging disease threats, communications, security, an adequate supply of food and fresh water, as well as other fundamental human concerns, now require globally informed answers. Researchers working internationally are being asked to pursue these problems, and the public is watching as never before. This presents remarkable opportunities in a world that is open to scientific cooperation and, perhaps more than ever, willing to fund it. In considering how we undertake such cooperation, it is useful to have an understanding of motivations, risks, varying perspectives, and potential outcomes. Why do investigators choose to work internationally? In nearly every case, researchers are driven by the desire for knowledge. They seek to advance their fields of science, and increasingly this work can be done best through international engagement. Many also are motivated by a sense of global citizenship, humanitarian concern, and a desire to see other countries reap the benefits of development and science-driven progress. For some, there are cost-efficiencies
22 •
to be realized through international collaboration that are too attractive to ignore. Some institutions or private concerns are particularly interested in international research because they see opportunities for income. In the fields of biomedical and public health research, there are some transnational disease threats, such as pandemic influenza, which can only be addressed by global networks of researchers. Climate scientists have similar requirements. There may even be a few scientists who see such research collaboration as an important contributor to harmonious international relations. All these reasons for engagement in international research are compelling and valid. For a growing number of scientists, they influence research directions and career choices. As with nearly all scientists, researchers working internationally seek to maximize productivity, hope to have an impact on their fields, and are fully committed to pursuing their investigations ethically. With all these factors in mind and informed by a variety of perspectives, this chapter focuses on four primary ideas. First, for humanitarian, economic, and security reasons, international research is in the public spotlight as never before. National leaders, some of the world’s richest individuals, and even rock stars think what scientists do is important, and they tell the world. This spotlight presents challenges and opportunities that make many investigators uncomfortable. They see it as a distraction or something to be avoided at all costs. Others contend that the research community should welcome this attention, because it can generate widespread support for the expansion of the global scientific enterprise. In any case, reaping its potential benefits requires skills and partners to which many scientists are not accustomed. Second, international research is apt to be more successful and greatly enhanced when scientists keep an array of different perspectives in mind as they design, implement, analyze, and report global research and training activities. Many investigators working internationally have benefited from the perspective of experienced diplomats and other members of their nation’s overseas community. Third, scientists working internationally and the institutions that support them need to understand local cultural and political contexts and to anticipate unintended consequences. Critically important histories, traditions, and relationships are often invisible to expatriate investigators. These can often contribute to unintended consequences in research, and some can be severely damaging to local collaborators, research subjects, or even individuals and institutions with no obvious connection to the immediate research activity. It is important that scientists working internationally and the institutions that support them strive to be aware of the elements of local contexts, and to anticipate and address their role in unintended consequences. Finally, investigators working internationally need to consider carefully and repeatedly their roles and responsibilities subsequent to the completion
of research projects. This concern takes on special importance as more international research is focused on prevention and intervention trials where there can be harsh consequences if follow-on requirements for the research population are not considered and adequately addressed. Such attention is also essential to help ensure that when scientists return to a locale or when the next generation of scientists follows the pioneers, international colleagues and research sites welcome additional collaboration. Bioethics standards increasingly require that international researchers consider responsibilities that may extend beyond the publication of research findings or the issuance of a degree. Several examples illustrate the relevance of these ideas and may provide insights for individuals interested in international engagement. The first case illustrates the impact that increased public attention can have on global biomedicine and public health. A few years ago, two couples from the United States visited South Africa on a fact- finding trip. One couple was the parents of Bill Gates, Jr., the founding chief executive director of the Microsoft Corporation. Their role was to help decide priorities for the new Bill and Melinda Gates Foundation. They were accompanied by Jimmy and Roslyn Carter, the former president and first lady of the United States. A team of diplomats and public-health specialists briefed them about the complex politics of South Africa and its eagerness to be considered a rising power. They also presented research findings that showed that South Africa had more individuals infected with the human immunodeficiency virus (HIV, the cause of AIDS) than any other country in the world. The team further explained that recent findings from research in Uganda demonstrated that mother- to-child HIV transmission could be drastically reduced using a very simple and virtually free antiretroviral intervention. The briefing team also mentioned that South Africa’s official policy did not include the provision of this drug in its public antenatal clinics. After the briefing and a few questions, this group of U.S. elders visited with Nelson Mandela and Thabo Mbeki, who was the South African president at the time. They then flew on to Nigeria. You can imagine the briefers’ surprise when they watched the evening news and saw former President Carter lambasting President Mbeki from the Abuja airport for not taking care of his people and not making use of good scientific findings to prevent HIV infection in infants. Carter also implied that President Mbeki’s overall approach to AIDS was uninformed by science and the evidence base it had produced, which of course sounded a lot like condescending imperialism to President Mbeki-whether justified or not. It was no surprise that the next interaction between U.S. health diplomats and the South African Minister of Health, a political ally of President Mbeki, included a chilly lecture on public health as a domestic issue and not a foreign policy matter, a “reminder” that not all health research is transferable, in the
24 •
minister’s opinion, and a quick dismissal. From that day forward, the U.S. science and public- health community faced special scrutiny whenever new AIDS research activities were proposed or launched. AIDS was already the main focus of U.S.-supported research in South Africa and a key foreign-policy issue between South Africa and the United States. With the involvement of South African scientists, often working with U.S. colleagues, the value of antiretroviral therapy was directly demonstrated in South African populations and eventually was widely introduced through a cooperative South Africa-United States partnership supported by the president’s Emergency Plan for AIDS Relief. This joint program ultimately met both South African and U.S. objectives. When a group of leading members of the U.S. Congress visited South Africa some years later, President Mbeki thanked the United States for its support of South African AIDS programs and research. Getting to that point required careful coordination and respectful engagement. It is not clear what role President Carter’s blunt comments might have played. What was learned by those involved in this international health interaction? The experience with President Carter demonstrates that the “apolitical” and convincing arguments of science can be used as a political tool, and in this case the South African and world media took advantage of the incident to describe President Mbeki as an “AIDS denialist.” Whether scientists are comfortable with it or not, many areas of international science (climate change research being another good example) are now part of the global political dialogue. Another lesson to draw from this series of events is that the “celebrity spotlight,” which is a defining feature of modern life, shines on work that used to appear primarily in scientific journals and conferences. Such attention brings with it powerful but unpredictable forces, with both risks and potential benefits. Well-informed researchers are actually finding remarkable advantage in this, because opinion-leader attention can generate an unusual level of public support, fresh funding, and the rapid translation of findings into practice or product. In the South African case, the incident and the glaring public spotlight it brought may have improved the chances that a recalcitrant minister would not interfere with antiretroviral therapy to treat HIV infections. Finally, the outcome of this chain of events demonstrated that by combining the authority of scientific discovery with foreign-policy skills and diplomatic approaches, both international research and science-based service delivery could thrive, even in a highly charged political atmosphere. This example also offers insights into the value of considering and understanding foreign-policy and science-diplomacy perspectives when planning for and engaging in international research. From the diplomats’ point of view, the science world is sometimes seen as politically naïve or intent on avoiding appropriate scrutiny. Nothing disturbs some diplomats more than government-supported visitors about whom they hear only when there is an
outcry in the media or some other controversy. Nearly every diplomat has stories about scientists who finished their work and left behind only bad feelings about data, or about samples taken out of the country inappropriately or even illegally, or about scientific credit not shared with local collaborators. Although modern standards of research and research ethics make these practices uncommon, there have been cases where the foreign ministries or departments of state and embassy officials either curtailed or forbade research, because it was perceived that local sensitivities or needs had not been considered or that research participants would be left without appropriate ongoing care and support once the research was complete. On the other hand, the diplomatic community is beginning to see international scientific collaboration as one of the key sectors for bilateral and multilateral engagement. Some of the more enlightened ambassadors have scientific goals integrated into their plans for host-country engagement. A strong science base is now recognized as an engine of development and a harbinger of improved population health and social well-being, especially in countries with emerging economies such as Brazil, China, India, and South Korea, which are now investing heavily in research and education. Senior ambassadors are often thrilled to have scientists from their home countries working in their host countries. However, they expect these investigators to understand the rules of diplomatic engagement (including keeping embassies informed) and to pursue their research following the same ethical and professional standards they would use at home. Because diplomats are giving increasing attention to scientific engagement, it is important for scientists to be aware of diplomats’ perspectives on international research. Where scientists see intriguing questions that will advance human understanding in their fields, diplomats want to know why the project requires international involvement and how pursuit of the research and its results might improve (or at least not damage) relations with the host country. Where scientists are sometimes focused on the accurate and methodologically sound collection of data, diplomats worry that researchers may choose to work internationally to escape the ethical constraints of studies done at home. Where some scientists feel their work is complete and all obligations are met once their findings are published, diplomats sometimes find themselves surprised to have to contend with foreign scientists or populations that feel ill-used and abandoned when the research protocol is fully executed. In addition, the end-users of research, those involved in the translation of research findings into practice or products, often see the work of both scientists and diplomats as incomplete. For many of them, international research is only justified if findings are made known, understood, and acted on in international settings where they can lead to improved health or other progress. In addition to considering various perspectives, international investigators need to give careful attention to cultural factors and sensitivities when
26 •
planning and implementing research. This is illustrated in a case shared by a colleague with long years of health-program engagement in Africa. An American nursing professor and investigator was teaching research at a nursing college in sub-Saharan Africa on her first international assignment. She and one of her students decided to compare the care provided by traditional midwives in home deliveries with that provided by professional nurses in government hospitals. The focus was on assessing a variety of clinical and psychosocial interventions, and the research protocol included videotaping interactions for later analysis. They secured all the necessary consents from patients, health facilities, midwives, and the nursing college. The college principal was enthusiastic about the study because she felt the videotapes would be useful for training purposes. The study went well and the findings were to be presented at a seminar to which senior government health officials and college leaders were invited. The seminar was well attended. The researcher presented the study, its hypothesis and methodology, and its findings; then, for background, they showed video clips. The audience sat in stunned silence as they watched government nurses providing care that could only be described as appalling, by any standard. The traditional midwives, on the other hand, looked like angels of mercy. The discussion afterwards did not focus on research results that might improve training or care, or even on how to engage midwives in the healthcare system. The participants wanted to know who owned the videotapes. Where would they be kept and who would have access to them? Had the women’s rights been violated? Had the clients’ husbands signed consent forms? What about the rights of the health workers? Did the hospital leadership give permission for the taping? The videotapes were confiscated by the principal. The study was never published, and the American professor was left wondering what she could have done differently and whether, as an expatriate, she should have conducted this study at all given the sensitivities involving cultural practices, professional boundaries, and local capacity to deliver care. This example raises issues about perspective and partnership. How important is it to see international research and training engagement from many perspectives? Are there others outside the usual range of consultation whose engagement could help define research objectives and improve research outcomes? From the perspective of the agency that funded this research, the methodology was reasonable, all appropriate ethical standards were met, the research was publishable, and the findings could have had an impact on clinical practice. The researcher’s home institution probably also found it reasonable and might have even considered it a contribution toward her bid for tenure. But from the point of view of the diplomats in the researcher’s home country, had
they known about this study, they might have been able to warn the investigator about a government hypersensitive to criticism of public-sector employees, about tensions between Western-style medicine and traditional-care providers, and even about local customs that could require a husband’s involvement in informed consent. From the end-user perspective, this research was a recipe for public embarrassment or possibly even official sanction. Was the research question itself flawed? Would the investigator have used a different methodology or presented the findings differently if she had had the benefit of other perspectives? When an investigator seeks to undertake any international research, the challenge is to remember what makes international research complex. To do such research well requires considering its design, methodology, hypothesis, data, and even analysis from many perspectives. Usually the most important perspectives are those of the host country’s collaborating partners and their institutions. With their help, international investigators may better understand both the local academic and wider sociocultural contexts, as well as the political realities that surround health research. The cultural and political context in which international research occurs may be very different from the prevalent research norms and conditions in researchers’ home countries. In addition to local research collaborators-who of course have their own personal interests at stake and may have reasons to accommodate or resist expatriate investigators’ plans-to whom can an investigator turn to fill knowledge gaps or confirm impressions? In some cases it is very informative to consult with the expected end-users of the research, but they are often inaccessible. In some places the diplomatic community also can offer an unbiased take on local conditions, politics, and practices that can help increase the likelihood of success as research is designed and implemented. Often, staff at embassies or at governmental or private organizations with an interest in public health or science may be able to make an important contribution that can enhance the development of research methodology, sampling strategies, and the procurement of required permissions. Although few scientists use this option, it can be helpful for scientists to seek out and rely on the advice of compatriot government officials or others who are scientifically literate, have had extensive international experience, and have developed local contacts and knowledge. Such advice can be especially helpful in understanding the motivations of local collaborators and research contexts, especially where corruption or domestic politics may be invisible to a visiting foreign collaborator. Another critical factor to consider in international research and training is the anticipation of unintended consequences and the value of paying attention to a broad environmental context, which is often difficult to identify, as the next case illustrates. The northeastern part of India borders Myanmar. This is a frontier area of dense jungle and mountain lakes crossed by a few legal and many more illegal
28 •
trade routes that carry manufactured goods from India eastward and, too often, heroin, gemstones, and living contraband westward. It is also one of the regions of India most affected by AIDS due to intravenous (IV) drug use increases 20 years ago. When Indian researchers at outposts in the border state of Manipur noticed these trends, they invited experienced international colleagues to measure the prevalence of HIV among the IV- drug-using population. The researchers worked with local social workers to find networks of young drug users, most of whom were adolescents or unemployed young men in their twenties. The investigators’ interventions helped the subjects understand the value of using sterile needles and linked them to the few nongovernmental organizations working with that disenfranchised population. The Indian and non-Indian researchers shared the same goals: to document the size of the problem, collect HIV samples to track the origins of the virus strain, and connect research subjects to care. A year or two after initiation of the project, during an assessment visit, the non- governmental organizations involved in outreach to the still- growing IV- drug-using population were asked about the impact of the earlier research. The organizations reported that many of the drug users who were identified through the research (the ones who were still alive) had been placed in prison by their families. When interviewed, a research participant’s mother said that the shame of drug abuse is worse than going to prison, even though many of the incarcerated never return from prison. In addition, many of the locals seemed to see this result of the study and its identification of research subjects as a perfectly reasonable outcome for individuals identified as having a drugabuse problem. Their HIV status just made them seem even more diminished as reliable family members and contributors to society. Although research-funding bodies rarely consider ethically reviewed research itself to be potentially risky, in many countries international research occurs within a context where the collection of data or the identification of risk factors can place both scientists and human-study participants at real jeopardy. Sometimes local collaborators do not want foreign colleagues to know the challenges they face, for fear that revelations might threaten funding or discourage continuation of the joint research. International investigators and funding agencies need to be especially attentive to ensure that international research does no harm. As the public watches more closely and higher expectations are placed on international research, even a few cases in which there are adverse, unintended consequences can cause major disruptions in the ability of scientists to continue their global efforts with widespread cooperation. Of course, it is actually far more common for unanticipated consequences of international research to be positive. In Kolkata (previously Calcutta) there was a very different outcome from earlier research among another disenfranchised population at high risk of acquiring HIV. Twenty years ago, Kolkata
sex workers were recruited to participate in Indo- U.S. HIV prevention trials with the cooperation of trusted community members who assisted with recruitment and data collection. Although research data were protected, there were still some issues with the police. Nevertheless, findings were published and shared widely with the community, and many of those who helped with the study emerged as leaders among the commercial sex workers. Over the last 20 years, members of the trade union of Kolkata sex workers have applied the findings of that early research, and the HIV prevalence rate among Kolkata sex workers remains among the lowest in the world for such a high-risk group. In Kolkata everyone has been surprised by the impact of research on the lives of uneducated and underprivileged women at great risk. The empowerment of sex workers was certainly not an intended consequence when U.S. and Indian investigators set out to test a behavioral intervention to evaluate strategies that would encourage condom use. Such outcomes are a reminder of why international research is so important and what makes it and the scientists who pursue it an invaluable resource for many communities. Another example from Africa illustrates this point. Recently in Kenya, South Africa, and Uganda, international teams of investigators working with sample populations of uncircumcised young men in communities with high HIV/AIDS prevalence offered half of them the option of being circumcised and the other half intensified, HIV- prevention counseling and condoms, which is the standard of prevention care. Those who chose medically supervised circumcision and those who did not were followed and monitored for the acquisition of HIV and other health- related outcomes. The men who acquired HIV were placed into long- term care, with antiretroviral treatment available, as medically appropriate, along with ongoing counseling. It was found that the young men who received the circumcision intervention had a 60 percent reduction in the likelihood that they would become HIV- infected over the duration of the study. This was a far better prevention outcome than anticipated. The intention of the research had been to understand why there are uneven patterns of infection among communities in Africa where few differences in other behaviors are observed. As a result of the research, the focus of HIV- prevention service providers shifted, and adult males sought medically supervised circumcision all across southern Africa. This research generated considerable global interest. It touched on some deeply ingrained cultural beliefs and practices, immediately engaged the interest of policy-makers, and confronted the researchers with complex communications challenges. Questions were raised about the exploitation of African research subjects, why some men were allowed to become HIV- infected, and what happened to them after the study. There was worry among policymakers that the public would misunderstand the results, and that men would resort to unsafe circumcision and post-circumcision behaviors, thinking that the procedure would fully protect them.
