Fig. 1: The ecosystem underlying the construction of the HCA ethics toolkit and its key HCA community stakeholders.

This figure provides an overview of the ecosystem underlying the construction of the HCA ethics toolkit and its key HCA community stakeholders. (I) Normative Ecosystem. The top of the figure depicts the sources of policies, norms and regulations that inform how tissues and data can be collected and shared, for contribution to international efforts such as the HCA. (II) Ethics Toolkit. In turn, these rules informed the development of different tools proposed in the HCA ethics toolkit which are publicly available at humancellatlas.org/ethics (blue rectangle). Different tools proposed are intended for different stakeholders of the HCA community. For instance, the ‘Ethics and data governance document’ and the accompanying ‘Ethics committee FAQs’ are intended to provide an overall description of the HCA, its data platforms and data release model in language that is accessible to data contributors, and their local ethics committees. These documents are also relevant to other HCA stakeholders as they have been developed by engaging different groups, including platform developers, data wranglers, and potential users (as depicted by the blue arrows). Consent tools are mainly intended for contributors to the HCA (as depicted by the blue arrows). The EWG engaged with specific contributor communities for sector-specific guidance, for instance, in the areas of paediatrics, developmental tissues, or clinical sampling. Finally, tools related to submission and sharing between sites are of particular use to both data wranglers as well as data users (as depicted by the blue arrows). (III) Key Stakeholders. As the atlas is developed, we will continue to pilot different tools (e.g., data sharing and contribution agreement templates) through engagement with these stakeholders within the HCA community, and monitor whether adjustments are needed.