Data sharing ethics toolkit: The Human Cell Atlas.

Area of Science:

• Human Cell Biology
• Bioethics
• Genomics

Background:

• The Human Cell Atlas (HCA) initiative aims to create a comprehensive reference map of all human cell types.
• Success of the HCA depends on diverse data sampling and open science principles for data sharing.
• International collaboration presents ethical and legal complexities in data collection and sharing.

Purpose of the Study:

• To outline the ethical and legal challenges encountered in the Human Cell Atlas project.
• To present the approaches and harmonized policies developed by the HCA Ethics Working Group (EWG).
• To guide the HCA research community in navigating diverse data collection and sharing scenarios.

Main Methods:

• Review of ethical and legal norms across contributing countries.
• Development of harmonized, international, and interoperable policies and tools.
• Analysis of diverse sampling scenarios, including living participants, deceased donors, and pediatric populations.

Main Results:

• Identification of significant ethical and legal challenges due to diverse sampling and varying international regulations.
• Proposal of harmonized policies and tools to facilitate ethical data collection and sharing.
• Establishment of a framework to support the HCA's open science philosophy.

Conclusions:

• Addressing ethical complexities is crucial for the success of large-scale international research initiatives like the HCA.
• Harmonized international policies are essential for responsible data sharing in human cell atlasing.
• The EWG's work provides a foundational framework for ethical considerations in human cell research.