Four Things to Know About Decolonization for Contraceptive R&D
Post written by Shana Abraham, Duke University student and intern at FHI 360
A year ago, decolonization was a concept I had only vaguely heard about, despite studying global health disparities in my college coursework; however, decolonization has recently risen to the forefront of the global health landscape. In preparation for joining the field of global health as a young professional, I took a student internship position at FHI 360 to work with the Decolonization and Global Health Equity steering committee, a group examining enduring global inequities from the lens of an international NGO working in family planning and contraceptive research and development (R&D). In this blog, as part of the “beginning with the end in mind” series, I draw on my student internship experience and explore ways racism and colonialist history and principles have shaped family planning and contraceptive R&D. By acknowledging the injustices of the past, we can see how they have impacted current, persistent inequities, and then reflect on essential questions that should guide research practices in the future.
1) What is decolonization?
An important first step to understand decolonization is defining some of the foundational concepts. Below are several key terms integral to exploring decolonization within global health, with definitions compiled from the work of several scholars within the field and synthesized by members of FHI 360’s Decolonization and Global Health Equity steering committee:
Colonialism: the practice of domination and subjugation of one people to another through the transfer of a settler population to a new territory and the erasure of Indigenous people's knowledge, culture, religion, and language
Decolonization: the process of dismantling legacies of colonialism and repatriation of Indigenous land, culture, knowledge, and language
Decolonizing Global Health: interrogating and dismantling international systems of power which have created and propagated health inequities globally, including acknowledging guiding principles and philosophies other than Western traditions
Health Equity: the absence of systematic disparities in health, or in the social determinants of health, between groups with different levels of underlying social advantage or disadvantage
Racism: a social system, functioning on multiple levels, where a dominant group categorizes people into social groups, or races, based on nationality, ethnicity, phenotype, or other aspects of social difference and imposes its power to devalue, disempower, and differentially allocate societal resources and opportunities to groups defined as inferior
In addition, when considering the application of these decolonization principles to family planning and contraceptive R&D, understanding the work and theory surrounding the concept of reproductive justice is crucial.
Reproductive Justice: the human right to maintain personal bodily autonomy, have children, not have children, and parent children in safe and sustainable communities
2) Lauded moments within contraceptive R&D have a dark side.
Over the past few decades, significant global progress has been made to address the unmet need for contraceptives. But while there have been great successes, who has suffered to achieve this progress and who continues to miss out on the benefits because of inequities? An example of a negative consequence in the advancement of the contraceptive R&D field occurred in the Puerto Rican oral contraceptive trials conducted in the 1950s, which were among the foundational efficacy studies key to obtaining FDA approval of the first oral contraceptive. Although the FDA approval of oral contraceptives is widely celebrated as a momentous advancement in the history of family planning and public health, it was achieved through exploitive clinical research practices. The Puerto Rican woman who participated in the trial were not informed they were taking an experimental drug or about any potential side effects of the pills, which were of a higher dosage than had been previously studied. During these trials, U.S.-based researchers also dismissed Puerto Rican clinicians who raised concerns about high rates of notable side effects.
Contraceptives have evolved to be much safer since this research, but women may recall these experiences in the not-so-distant past and may be wary of using current methods and of participating in ongoing and future research to develop new products. Although ethical safeguards and regulations regarding the conduct of clinical trials have been put in place since the Puerto Rico trials, this and other examples of historical unethical research and medical practices have perpetuated an understandable concern about researchers and health providers targeting vulnerable women based on race, poverty, and other social factors.
3) We cannot forget the history and legacy of injustices that occurred in the past.
Although substantial efforts have been made to increase access to contraceptives through global partnerships like FP2020 (now FP2030), large proportions of women remain who would like to avoid pregnancy but aren’t using a modern method of contraception. The causes of this unmet need for family planning vary by country and context, and the family planning field generally discusses issues like method-related concerns, sociocultural norms, political barriers, and quality of services as root causes for contraceptive non-use. Yet, another barrier exists that tends to be overlooked: mistrust towards health research and technologies among populations that may need these resources the most.
For example, the physician often called the “father of gynecology”, Dr. J. Marion Sims, developed his technique to repair fistulas by exploiting the bodies of enslaved Black women through painful experimental surgeries without anesthesia or consent. In fact, present-day research ethics standards have been, to a large extent, developed in response to similar past instances of unethical conduct in which participants were exploited for research purposes or harmed without informed consent. Some may assume these injustices are only a part of the past, but situations continue to manifest today in different forms. One recent example, albeit not research per se, is the discovery of forced sterilizations in immigration detention centers in 2020, which is part of a long history of coerced sterilization of Black, Indigenous, and Latine people—especially the poor, disabled, and immigrants—in the U.S. and globally. Those developing new contraceptive technologies need to be aware of this history and the legacy of medical mistrust that permeates the relationship between researchers and research participants in many communities that have been systematically marginalized, excluded, or for whom the benefits of new research developments have not been realized. Many of these concerns have been clearly highlighted by the COVID-19 pandemic, where issues of fear and mistrust have been underscored related to vaccine uptake and access.
4) Racism continues to impact reproductive health outcomes and access today.
Reproductive injustices are not limited to these isolated incidents – in fact a plethora of research highlights enduring racial disparities in areas such as maternal mortality and other reproductive health outcomes due to structural inequities rooted in racism. Racism is embedded within the history of many colonized and colonizing nations such as the United States, including the legacy and impact of slavery and persisting with contemporary social conditions like transgenerational poverty, lack of opportunities for formal education and jobs, residential segregation, perpetually low-resourced communities, etc. These adverse conditions create barriers to health access, resulting in even more risk for poor reproductive health outcomes. Of course, a novel contraceptive product cannot and will not solve persisting structural and systemic issues like racism, but those working in contraceptive R&D must understand the social and cultural ecosystem in which products under development will operate to proactively account for factors that could impact future product use.
Looking forward: Reflections for future contraceptive R&D efforts
Through the four points of this blog, I’ve highlighted a few of the many impacts of colonialism and racism on reproductive health, family planning, and contraceptive product development. For ongoing and future work, those developing new contraceptive technologies should consider the legacies of these injustices when developing and introducing novel products. Here are a few suggested questions to consider for any contraceptive R&D efforts:
What is the history of research being conducted by, with, and for this community or population specifically? How are any continuing legacies of health research felt by this community or population?
What is the positionality—or the social and political context that creates identity, and how identity influences understanding of and outlook on the world—of the research team within this research? Does the team have an identity that enforces an unjust power dynamic?
How can the community be involved thoughtfully throughout the research and development processes?
What potential barriers exist to uptake of this novel contraceptive product related to medical mistrust and systemic racism?
Will the benefits of this new technology be realized for the community in which the research is being conducted? Is the research doing more harm than good for this community?
Decolonization can seem overwhelming; yet at its core, it’s asking for a simple thing: to give power, recognition, and inclusion to the populations who have been marginalized and exploited for generations, and with and for whom we are often developing these new health innovations. By continuously reflecting on how we can improve our processes, we can create space for critical action to be taken to reduce global health inequities and improve health outcomes across the world.
For more on FHI 360’s on-going work surrounding decolonization, please check out recent podcast episodes and interviews on the topic. And be in touch with the CTI Exchange on Twitter, LinkedIn, or via email at firstname.lastname@example.org for more on how to bring decolonization into contraceptive R&D.