Table 1 Overview of the categories of tools developed for the HCA ethics toolkit. The full toolkit is available online at: humancellatlas.org/ethics

General Ethics and Data Governance

Explain the HCA project in simple terms, providing useful background documents for institutional ethics review committees tasked with approving the collection of tissues and the contribution of data to the HCA

Consent tools

Templates and assessment tools for different HCA sampling scenarios (adult participants; addendum to consent forms for sampling of clinical leftover tissues; consent template for deceased donors; templates for the collection of developmental tissue samples; consent filter assessment tool for legacy datasets)

A paediatric portfolio is available alongside the main consent tools to address certain issues specific to the paediatric cell atlas, including templates for the assent of minors as well as the consent of mature minors/parents/legally authorised representatives.

Data submission and sharing between sites

Template Material/Data Transfer Agreement, which incorporates key elements specific to the HCA, particularly with respect to open data sharing.

Policies for the implementation of a managed access tier for certain datasets.

Implementation of a Data Access Compliance Office (DACO) and Data Access Committee (DAC) (including implementation procedures)

Additional tools

Background reading material on the following topics: ‘Building the Human Cell Atlas: Issues with Tissues’¹⁷, ‘Children’s Right to Health’⁵⁰, and ‘Children’s Data Protection’⁵¹

Ethics Helpdesk

Helpdesk for the HCA community to submit questions and to ask for certain topics to be brought to the attention of the HCA EWG