The Ethics Working Group (EWG) of the HCA is developing an Ethics Toolkit to help members of the HCA community understand the ethical framework of the HCA. It provides tools that researchers can adapt to their own regulations, laws, local context and requirements (for example, consent, data sharing, etc.).
The Ethics Toolkit does not intend to provide compulsory or mandatory documents or legal advice. In all cases, HCA projects must consult with their research ethics committees and institutions to verify how these tools can be adapted to any specific requirements.
The following tools are made freely available to the HCA community:
Core Consent Elements - Summary version of the Core Consent Elements detailed in the Ethics and data governance document.
HCA main consent template - Full research consent form template, can be used for sampling of tissues from healthy or diseased, capable adult participants.
HCA consent addenda (in development) - Consent form templates for additional tissue sampling scenarios.
The Ethics Toolkit does not intend to provide compulsory or mandatory documents or legal advice.
Template consent form for the re-use of samples collected in a clinical context;
Template consent forms for developmental atlas;
Template consent clauses for the use of clinical samples
HCA special consent clauses (in development)
Consent filter - HCA Retrospective Assessment Filter, Self-assessment tool for existing consent forms/consent forms used to collect legacy samples/data.
Ethics and consent inventory (in development) - Examples of consent forms developed by other HCA member projects.
How to contact us:
You can submit queries by writing to: firstname.lastname@example.org
We also welcome feedback and suggestions on the ethics toolkit.
How does the helpdesk work?
The HCA Ethics helpdesk provides a centralized contact point for queries related to ethical aspects of the HCA project. Members of the HCA community can submit questions and ask for certain topics to be brought to the attention of the HCA Ethics Working Group.
What does the helpdesk not do?
Information provided by the Ethics Helpdesk does not constitute legal advice. This guidance is meant to help researchers understand and implement the HCA Ethics Toolkit, and to make necessary adaptations according to their local laws, policies and ethical framework.
The Ethics Helpdesk cannot approve consent forms or make a determination on whether they are appropriate for contribution of data to the HCA. Contributors generally must contact their local ethics committees to obtain this approval. However, the Ethics Helpdesk can provide guidance on how to use the HCA consent tools.
FAQs (in development)
The Ethics Helpdesk will compile a set of Frequently Asked Questions it has received. These aim to provide guidance on common questions faced by members of the HCA community.