Ancestral remains should be regarded not as “artifacts” but as human relatives who deserve respect

National and international public–private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges.

In recent years, the field of paleogenomics has grown into an exciting and rapidly advancing area of scientific inquiry. However, scientific work in this field has far outpaced the discipline’s dialogue about research ethics. In particular, Indigenous peoples have argued that the paleogenomics revolution has produced a “vampire science” that perpetuates biocolonialist traditions of extracting Indigenous bodies and heritage without the consent of, or benefits to, the communities who are most affected by this research. In this article, we explore these ethical issues through the case study of a project that sequenced the ancient DNA (aDNA) of nine Ancestral Puebloan people from Chaco Canyon, New Mexico. By providing a “thick description” of this controversy, we are able to analyze its metanarratives, periodization, path dependency, and historical contingencies. We conclude that the paleogenomics revolution needs to include an ethical revolution that remakes the field’s values, relationships, forms of accountability, and practices.

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

This article reviews a range of tribal policies regarding the proper solicitation, collection, disposition, and return or disposal of biological samples, or biospecimens, which include not only the sample itself but also data, such as genetic information, derived from the sample. These policies are not always found within tribal regulation, and many that exist emerge from a discrete set of models, such as from the American Indian Law Center (AILC), the Canadian Institutes of Health (CIHR), and the Indigenous Peoples Council on Biocolonialism (IPCB). Some policies merge language from these national models and conceptual papers with tribally specific foci, including incorporating tribal language for specific principles to guide research with that community and their biospecimens. The article concludes with recommendations for principles that emerge as paramount in the review for directing research involving biospecimens.