2020 | Nanibaa’ A. Garrison- “Entwined Processes: Rescripting Consent and Strengthening Governance in Genomics Research with Indigenous Communities” (2020)

Congratulations to ISG Associate Professor Nanibaa’ A. Garrison for her recent publication, “”Entwined Processes: Rescripting Consent and Strengthening Governance in Genomics Research with Indigenous Communities” (2020). 

Abstract

In their paper in this issue, Prictor et al. propose using a dynamic consent approach for recruiting Indigenous Peoples into genomic studies as it has the potential to “provide for autonomous and informed choice by donors and their descendents.”¹ This approach can provide the foundation to honor Indigenous Peoples choices over time, allows for more bi-directional engagement with the researchers, and increases transparency and communication about new proposals to use existing samples.² Dynamic consent preferences can be captured through an electronic interface that allows donors to make, update, and review consent decisions over time. The tracking of participants’ preferences and allowing them to change their decisions over time is crucial to maintaining trust and accountability. Reaching all participants for updates might be prohibitively time-consuming and expensive, especially in low-resourced areas where internet is not accessible to all. Regardless, members of the research team should revisit these communities to update them on what has been done, to introduce proposed research, and to allow participants to update their consent if they feel compelled to do so.

To read more of  Garrison’s publication, please click here.