Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study.

Broad health data sharing raises myriad ethical issues related to data protection and privacy. These issues are of particular relevance to Native Americans, who reserve distinct individual and collective rights to control data about their communities. We sought to gather input from tribal community leaders on how best to understand health data privacy and sharing preferences in this population. We conducted a workshop with 14 tribal leaders connected to the Strong Heart Study to codesign a research study to assess preferences concerning health data privacy for biomedical research. Workshop participants provided specific recommendations regarding who should be consulted, what questions should be posed, and what methods should be used, underscoring the importance of relationship-building between researchers and tribal communities. Biomedical researchers and informaticians who collect and analyze health information from Native communities have a unique responsibility to safeguard these data in ways that align to the preferences of specific communities.

Islands as Laboratories: Indigenous Knowledge and Gene Drives in the Pacific.

This article argues that the genetic engineering technology known as gene drive must be evaluated in the context of the historic and ongoing impacts of settler colonialism and military experimentation on indigenous lands and peoples. After defining gene drive and previewing some of the key ethical issues related to its use, the author compares the language used to justify Cold War-era nuclear testing in the Pacific with contemporary scholarship framing islands as ideal test sites for gene drive-modified organisms. In both cases, perceptions of islands as remote and isolated are mobilized to warrant their treatment as sites of experimentation for emerging technologies. Though gene drive may offer valuable interventions into issues affecting island communities (e.g., vector-borne disease and invasive species management), proposals to conduct the first open trials of gene drive on islands are complicit in a long history of injustice that has treated islands (and their residents) as dispensable to the risks and unintended consequences associated with experimentation. This article contends that ethical gene drive research cannot be achieved without the inclusion of indigenous peoples as key stakeholders and provides three recommendations to guide community engagement involving indigenous communities: centering indigenous self-determination, replacing the deficit model of engagement with a truly participatory model, and integrating indigenous knowledge and values in the research and decision-making processes related to gene drive.