Developing Collaborative Research to Identify the Impacts of Helicobacter Pylori Genomics Research on Northern Canadian Indigenous Communities
Genomics research (studying all the genetic information in an organism) can generate valuable scientific knowledge. For Indigenous peoples, it offers knowledge regarding biological matters that concern them. The norms and expectations for openly sharing the data created, however, were developed to primarily benefit science and scientific researchers, and guidelines for genomics research do not consider the special context of research with Indigenous partners, who have been historically exploited by academic institutions. Despite this negative history, Indigenous communities may still wish to engage in genomics research, and therefore, it is important to identify the societal impacts of the research on the communities who seek it. The goal of our proposal project is to collaboratively identify the potential impacts of sharing genomics data from a Helicobacter pylori (H. pylori) genomics project. Since 2007, over 1200 residents of Indigenous communities in the Northwest Territories and Yukon have participated in research to learn more about H. pylori infection. Based on community concerns about the infection, the Canadian North Helicobacter pylori (H. pylori) Working Group formed in 2006-2008, bringing together Indigenous community members, their healthcare providers, territorial health authorities and academic researchers. The working group has demonstrated that the community concerns were well founded, including estimating that this bacteria that infects the stomach lining of humans is 23 times more prevalent in northern Canadian Indigenous communities than across southern Canada. The research team also identified a higher prevalence of more severe disease outcomes in northerners infected by the bacteria. Concerned by the increased health burden, communities have advocated to study the bacteria in more detail. While genome sequencing of the collection of bacteria isolates from 258 individuals has the potential to answer community questions about the nature of the bacteria, if the genomic data is shared, there are also potentially harmful impacts on the communities. This is because sharing genomic data in an openly accessible database, as is the standard for genomic data, could result in other researchers investigating the ancestry and migration of Arctic Indigenous Canadian communities without informed consent from the communities. Our proposed project seeks to address these challenges by generating information required to develop data sharing processes that respect community values for H. pylori genomics research.