Potential research ethics violations against an indigenous tribe in Ecuador: a mixed methods approach

BMC Medical Ethics

Leonardo Tamariz¹  Lila Adana-Diaz²  Juan Carlos Baca³  Alegria Norris⁴  Lenin Gómez-Barreno⁵  Esteban Ortiz-Prado⁵  Katherine Simbaña-Rivera⁵  Alex Lister⁶ 

[1]Division of Population Health and Computational Medicine, University of Miami, Florida, USA

[2]Faculty of Psychology, Universidad de Las Americas, Quito, Ecuador

[3]Grassland Group, Technical University of Munich, Munich, Germany

[4]Ministerio de Biodiversidad, Quito, Ecuador

[5]One Health Research Group, Faculty of Medicine, Universidad de Las Americas, Ecuador Calle de los Colimes y Avenida De los Granados, 170137, Quito, Ecuador

[6]Public Health Program, Faculty of Medicine, University of Southampton, Southampton, England

关键词: Consent;    Research ethics board;    Indigenous populations;    Waorani;    Ecuador;   

DOI  :  10.1186/s12910-020-00542-x

来源: Springer

【 摘 要 】

BackgroundBiomedical and ethnographic studies among indigenous people are common practice in health and geographical research. Prior health research misconduct has been documented, particularly when obtaining genetic material. The objective of this study was to crossmatch previously published data with the perceptions of the Waorani peoples about the trading of their genetic material and other biological samples.MethodsWe conducted a mixed methods study design using a tailored 15-item questionnaire in 72 participants and in-depth interviews in 55 participants belonging to 20 Waorani communities about their experiences and perceptions of participating in biomedical research projects. Additionally, we conducted a systematic review of the literature in order to crossmatch the published results of studies stating the approval of an ethics committee and individual consent within their work.ResultsA total of 40 men (60%) and 32 women (40%), with a mean age of 57 ± 15 years agreed to be interviewed for inclusion. Five main categories around the violation of good clinical practices were identified, concerning the obtention of blood samples from a recently contacted Waorani native community within the Amazonian region of Ecuador. These themes are related to the lack of adequate communication between community members and researchers as well as the voluntariness to participate in health research. Additionally, over 40 years, a total of 38 manuscripts related to the use of biological samples in Waorani indigenous people were published. The majority of the studies (68%) did not state within their article obtaining research ethics board approval, and 71% did not report obtaining the informed consent of the participants prior to the execution of the project.ConclusionClinical Research on the Waorani community in the Ecuadorian Amazon basin has been performed on several occasions. Unfortunately, the majority of these projects did not follow the appropriate ethical and professional standards in either reporting the results or fulfilling them. The results of our investigation suggest that biological material, including genetic material, has been used by researchers globally, with some omitting the minimum information required to guarantee transparency and good clinical practices. We highlight the importance of stating ethics within research to avoid breaches in research transparency.

【 授权许可】

CC BY