Actor-Network Theory, Genetic Disorder Diagnostic (GDD) Testing and Society in Gujarat: An Empirical Analysis

Abstract

This paper explores the intersection of genetics, health and society in India by focusing on the state of Gujarat. Based on the empirical study using in-depth interviews, supplemented by analysis of government documents and meta analysis of the articles published in the area, it deals with the genetic tests for the detection of mutations in any gene of the human body which are believed to be the cause of genetic disorders. It attempts to understand the present status of genetic testing and the socio-economic background of the people who opt for the testing. By using insights from the science and technology studies (STS) and taking actor-network theory (ANT) as conceptual framework, it tries to view genetic testing as a heterogeneous set of practices and tools. Gene has been enrolled as a non-human ‘actant’ here and subsequently linked to the ‘network of actants’. Here, it is argued that the heterogeneity of the genetic tests and screening requires a range of regulatory mechanisms. The paper also focuses on the need of better infrastructure in terms of laboratories and trained personnel. It also highlights the importance of community leaders to deal with the avoidance behaviour of patients for screening and management of genetic disorders.