Science Summit at United Nations General Assembly (UNGA78)

Introduction and aims

We represent a group of researchers and clinical practitioners working with Universities and Foundations in the United States to partner on health and education research in local communities in East Africa (Kenya and Uganda). Our work spans rural and urban settings for understanding the contributions local communities and indigenous wisdom can offer to the science of health-seeking behavior and human flourishing, including the context of education. We shall share the challenges we face in collaborating remotely and in-person on complex problems related to neurology, public health, and infectious disease. Those challenges include IRB approval policies across countries and the need to attend to repeatable scientific data and evidence provided in open-source venues, per requirements issued by research funding bodies. Who owns the data and how the data can be equitably sourced, accessed, and distributed, remains a crucial problem of our work. Our hypothesis is that by sharing our own challenges in navigating international science policy frameworks, we may work with other delegates to ensure more significant equity and inclusion for marginalized voices in East Africa, including the Batwa, an historically marginalized set of communities' long-denied human rights.

Abstract

We use mixed methods for our human subject research in neurology, infectious disease, and education practices. In one study represented here, the researchers hypothesize that kinship relations, including ancestral and spiritual actors, strongly influence health-seeking behavior and thus must be studied qualitatively and quantitatively to ensure sound principles guide future health interventions. The proposed study has two complementary aims.

The first is empirical:
(1) To determine how social networks impact treatment-seeking for a group of 50 participants in Uganda. To do this, they will collect data on patient behavior and social connections using a network mapping and survey tool called PERSNET. The second aim is theoretical,
(2) To develop from the data a theory of the benefits and dangers of viewing humans as “porous” or readily influenced by outside forces and actors in the context of healthcare.

The applied potential of this theory is to support the design of culturally and contextually appropriate brain health interventions. This study is motivated by recognising the shortcomings of the disease-centric model of medicine, which prioritizes technological and biomedical solutions to physical health while failing to recognize the influence of the social or cultural environment on well-being. Referencing Charles Taylor’s conceptualization of the “buffered” and “porous” models of personhood, the researchers propose that the current disease model of health care must evolve in a way that recognizes the porosity of human beings and the interconnectedness of individuals to their broader social context. This project seeks to contribute to this aim.

An interdisciplinary team leads the project from the Human Network Initiative, which includes a philosopher, neuroscientist and theologian, building on existing research partnerships in Uganda. The Human Network Initiative is located in the Neurology Department of Harvard Medical School / Brigham and Women’s Hospital. It seeks to explore the manifold and massive ways that interpersonal community, or its lack of presence, affect brain health and general flourishing.

Other represented researchers and clinical practitioners include those specializing in randomized control trials in Kenya and Uganda, as well as infectious disease and women's health in the rural rainforest region of southwestern Uganda.

Expected outcomes

The outcomes of the research are many:
(1) open source publications;
(2) international conferences;
(3) short documentary films;
(4) up-skilling of local community-based research partners.

Overall, our work will shape international science policy by including neglected communities and side-lined traditions of wisdom that inform the daily lives of millions of people in East Africa and the United States. Our international partnerships can ensure that more voices can shape science policy, especially in matters of data governance and ownership with respect to public health.