Chapter 1. Introduction
IP.3: Deep Dive – Genetic Research Among the Havasupai: A Cautionary Tale
Approximate reading time: 1 minute
What would you do if you found out that a blood sample you provided for what you thought was research into a genetic link for a prevalent disease in your community was actually used for different purposes without your knowledge? This scenario unfolded for the Havasupai Tribe in Arizona, who were shocked to learn that blood samples collected by researchers from Arizona State University (ASU), under the guise of diabetes research, were later utilised for studies on various diseases and genetic analyses, breaching fundamental research ethics. This incident underscores the critical need for clear communication and informed consent in research. To grasp the nature of the misunderstanding between the Havasupai Tribe and ASU, it’s important to delve into the principles of community-based participatory research, especially the crucial aspect of informed consent.
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