Re-configuring the concept of vulnerability: Inclusion of refugees in biomedical research

Abstract

Vulnerable populations in biomedical research have attracted attention in research ethics since the creation of the Nurnberg code in 1947. Research guidelines establish ethical principles in order to protect vulnerable individuals from exploitation in biomedical studies. Vulnerable groups may include women, children, the mentally disabled, racial minorities, or refugees. In this thesis, I will focus in particular on refugees. The uniqueness of refugees can be defined through their сontextuality. Particular, refugees are not just vulnerable individuals who live in the same social, cultural and legal contexts with researchers, but they move from the context of their home country to another context of the host country, thus bringing one context within another. This сontextuality may contribute to additional complexities for the inclusion of refugees to a biomedical study. The thesis consists of five chapters. The first chapter gives an overview of the concept of autonomy and the way this concept has been constructed in medical ethics. I will show how the concept of vulnerability, which indicates certain risks for autonomy, has been shaped in research ethics. The second chapter is devoted to an in-depth analysis of the concept of vulnerability in biomedical research, its rationale, and its limitations. In this chapter, the focus will be on the Belmont Report as one of the most important documents that defines an ethical framework for biomedical studies and gives an explicit definition of vulnerability. The chapter looks through the motivation and reasoning for establishing the concept of vulnerability and provides a critical analysis of its limitations. In the third chapter, I will discuss the concept of vulnerability and its re-definition by three groups of scholars: Hurst (2008), Lange et al. (2013), and Luna (2009). These authors propose context-sensitive understandings of vulnerability that expand beyond its definition in the Belmont Report. I will critically synthesize the three approaches of these authors and emphasize the necessity of looking at the design of biomedical research itself. In this chapter, I will argue for the benefits of participatory methodology. The fourth chapter will give a detailed overview of participatory methodology and of its adaptation in anthropology and learning health system. In the fifth and conclusive chapter, I will analyze what possibilities and limitations participatory methodology can bring to biomedical research involving refugees and propose my own design for conducting such studies.