Indigenous Populations: Decision Making and Informed Consent to Research

Abstract

Taken together, Tupara’s (2012) article on decision making for health research in Aotearoa, New Zealand, and Sherman and colleagues’ (2012) case study from the Peruvian Amazon examining indigenous principles and ethical guidelines for informed consent, speak truth to the difficulties faced by investigators conducting research involving indigenous populations. Their detailed analyses of the ongoing and myriad challenges associated with informed consent to research with indigenous groups call attention to three interrelated issues: first, the history of colonization of indigenous people and its implications for health research in their communities; second, the application of western ideologies about informed consent in communities with different beliefs about the process of decision making; and third, the pragmatic constraints that researchers face in developing strategies to identify culturally appropriate models for implementing the process of informed consent. Application of the process of informed consent to research with indigenous people has received increased attention in the last decade. Challenges associated with informed consent such as lengthy forms and the use of scientific language that can be confusing are not unique to research involving indigenous populations. However, the legacy and negative effects of western colonization and its implications for implementing informed consent to health research with indigenous people is profound. Trust is an essential ingredient of the informed consent process in any cultural setting. Long histories of domination, subjugation, and discrimination by colonial powers diminish the potential for establishing trust with individuals or institutions representing “foreign” interests. In their arguments for the need to tailor informed consent to research, Rotimi and Marshall (2010) highlight issues associated with conducting research involving indigenous populations. Although Rotimi and Marshall’s (2010) paper focuses on international genetic and genomic research, the concerns they raise are applicable to health research generally. Both academic and industry investigators have been