AMA Journal of Ethics^®

Abstract

In this case scenario, a medical student, Jenny, is conducting congenital heart disease research in a resource-limited setting faced with water insecurity. She has concerns about how ethical it is for her to conduct advanced clinical research in a region with more basic health needs. The first commentary argues that advanced clinical research in resource-limited settings follows the ethical principle of beneficence and interactional justice but violates the principle of distributive justice. The second commentary questions whether beneficence is enough, since the Belmont Report states that beneficence is the obligation to simultaneously reduce harm and increase benefit. It calls upon public health physician-scientists to think deeply about how to involve communities in their research—and how to insert themselves into health policy development processes.

Case

Medical student Jenny arrives in a developing country optimistic and eager to participate in congenital heart disease research under a world-renowned clinician and researcher. Jenny stays with a local family in a village. Each morning, she hears the eldest daughter of her host family rise before dawn on her way to the local river. Balancing a large, filled-to-the-brim basin on her head, she travels daily with other women from her village to bring water to her home for drinking, washing, cooking, and cleaning.

Jenny wonders whether it makes sense from an ethical point of view to focus research in this community on developing highly specialized interventions for congenital heart disease when the people here only have reliable access to clean drinking water because a woman from each home—like many women in the world—spends much of her day retrieving it. As a guest, Jenny is aware that members of her host family make do with less water so that she can have a share of it. Additionally, some of the women have expressed concern that their access to their current clean water source could be limited in the future, due to contamination threats from upstream farms and local petroleum extraction as well as potential privatization of a large tract of currently public land that the women traverse to get to the water source.

Jenny wonders whether she and other members of her research team should begin participating in the water retrieval journey with the neighboring women. She also wonders whether their research efforts might be better devoted to helping members of this community achieve more certain water security over the long term.

Commentary 1

 Jenny’s case represents what will undoubtedly become an increasingly common ethical dilemma in global health over the next 20 years. One of the major foundations supporting international development, the Bill and Melinda Gates Foundation, predicts that the economic gap between low-income and middle-income countries will disappear by 2035 [1]. This rapid economic development is expected to trigger and be accompanied by equally rapid developments in the health of their populaces. Advancements in medical technology and health delivery systems in low-income countries can realistically reduce infectious, maternal, and child mortality to universally low levels within the next two decades [2-3]. However, achieving advances in medical technology does not always equate to the universal provision of basic public health needs. Even in high-income countries with fully developed and long-standing health systems, there are local populations suffering from persistent public health concerns such as food and water insecurity [4-5]. This dichotomy is more pronounced in nations that have not yet completed their economic transition and where many people reside in locations with limited resources. Researchers and health professionals working in these settings are thus faced with an ethical question of justice: How can they best allocate their talents and skills in order for the local population to receive maximum benefit [6]?

The complexity of this ethical conundrum’s solution mirrors the complexity of the problem. Jenny is a member of a research team that specializes in congenital heart disease. Furthermore, the area where she is based might have an uncharacteristically high rate of congenital heart disease, which would make her research critical to the future well-being of her host village. Under these circumstances, Jenny’s focus on congenital heart disease follows the principle of beneficence, which makes the welfare of research participants a primary concern, because she is using her knowledge and ingenuity to analyze and overcome a medical issue faced by her host village. Although Jenny exercises beneficence, she still falls short of upholding the principle of distributive justice. Distributive justice is the allocation of resources such that the community using the resources achieves the best outcome [7]. Under a utilitarian framework, the best outcome is synonymous with the maximization of benefit [7]. In settings where resource scarcity jeopardizes water security, it is unlikely that there are the additional resources needed to support specialized clinical research and thus to maximize benefit. Jenny and her team must choose between preserving local health resources while sacrificing quality research or diverting local health resources to uphold the standards of specialized clinical research. While both options may yield good outcomes, neither yields the best possible outcome.

Balancing Clinical Research with Community Needs

The amount of resources required to appropriately perform and act on Jenny’s research might be extraordinary. Although people living in resource-limited settings are entitled to the same benefits of clinical research that are available to those in the developed world, these benefits are only possible if the clinical research from which they are derived is held to the same rigorous standards that govern clinical research in wealthier regions [8]. These standards include having adequate infrastructure in place for quality assurance and quality improvement of the study, having appropriate staff and resources necessary to execute the study, and being able to adequately educate and gradually assess the comfort and willingness of research participants in the study [9]. Given the potential drain on resources that could be required to achieve these standards, all measures should be taken to maximize the research’s impact on the local population.

However, in a community where basic public health needs are difficult to achieve, advanced medical care may be a secondary concern. According to the renowned psychologist Abraham Maslow, people cannot address higher human needs until they have addressed basic necessities for survival such as food and water security [10]. In Jenny’s host village, the principle of Maslow’s hierarchy dictates that water security must be addressed before more advanced forms of health care can be successfully implemented. Otherwise, the people of the village would likely have difficulty in making the commitments necessary to ensure the quality of the study. These conditions could create an unfavorable risk-benefit ratio for the community if the risks of diverting resources away from water security outweigh the benefits that would be gained from a poorly executed study [8]. An unfavorable risk-benefit ratio would undermine Jenny and her team’s ability to ethically perform their research [8]. Jenny and her team’s research might meet other qualifications that govern clinical research ethics in resource-limited settings, but many of these components are tied to ensuring a favorable risk-benefit ratio, which would be difficult to do without first ensuring water security. Given these circumstances, Jenny and her team should first direct their attention to addressing water insecurity in the village. While addressing these concerns might be time consuming for Jenny and her team and would possibly require more than one trip to the village, Jenny and her team can ethically proceed with their research only after these concerns have been addressed.

Nevertheless, students and health professionals who perform advanced clinical research in resource-limited settings can be valuable assets to their host communities, and these communities often reciprocate the benefits researchers provide with generous hospitality. As the beneficiaries of their gratitude, researchers may find themselves facing a new dilemma. The purveyors of such generosity are usually the same individuals who tend to a household’s basic needs, such as food and water acquisition. In many resource-limited settings, this means the provision of hospitality becomes the primary responsibility of women and children [11].

While conducting specialized research in resource-limited settings might raise questions about distributive justice, the treatment researchers receive from their host communities might elicit concerns about interactional justice. Interactional justice is primarily concerned with how people are affected by decisions enacted by others and with treating the people affected by these decisions with dignity and respect [12]. Host families are subject to decisions made by their guests in several ways, with the provision of food and water being chief among them. Even if host families are compensated for accommodating visiting researchers, the household members responsible for providing and maintaining the accommodations must still expend additional time and effort that might have been used in other ways. For example, reductions in water collection times have been shown to allow women and children more opportunities for education, quality family time, and other proactive activities [13]. Jenny’s desire to aid in water retrieval reflects her understanding of the ramifications of her presence for her host family. While it is appropriate and within the bounds of interactional justice for Jenny and other members of her research team to assist with water retrieval and other household tasks, they should offer their assistance while respecting the cultural and social practices of their hosts.

Conclusion

In summary, Jenny’s research and other research like hers can and should be ethically performed in resource-limited settings if the communities’ basic needs have been fulfilled. Although her research exemplifies beneficence, it does not meet the qualifications for distributive justice, as it does not maximize benefit for the local population experiencing water insecurity. As such, Jenny and her research team should review the process through which their research is implemented in order for it to have the greatest impact on the local population and address water insecurity in the village. Jenny and others might also ease any burden caused by their presence by providing assistance with household tasks; however, they should do so in a manner that is culturally and socially acceptable to their host communities. If Jenny and her team are able to successfully implement distributive justice in their research and interactional justice in their host community, they can be the catalysts for both short-term and long-term positive change in that host community.