Data Retention and Deposit Guidelines for Research Involving Human Participants

Why should I deposit my research data to a data repository?

To meet funding agency requirements
To meet journal data policy requirements
To publish data as a scholarly product according to the FAIR (Findable, Accessible, Interoperable, and Reusable) principles
To adopt open science practices such as increasing research accountability, reproducibility, open engagement and reducing duplication

Determine the data disclosure risk levels and decide whether data can be retained or deposited

Data disclosure risk levels	Low risk	Medium risk	High risk	Extreme risk
Definition	Public data Identifiability [no] Vulnerability [no] Sensitivity [no]	Identifiability [can be de-identified] Vulnerability [no] Sensitivity [maybe]	Identifiability [yes] Vulnerability [maybe] Sensitivity [yes]	Identifiability [yes] Vulnerability [yes] Sensitivity [yes]
Retention	Data may be retained indefinitely	Data may be retained indefinitely	Data may be retained indefinitely	Data must be destroyed
Deposit	Data should be deposited with unrestricted access	De-identified data should be deposited with unrestricted access	De-identified data should be deposited with restricted access	Data should not be deposited anywhere

Adapted from "Human Participant Research Data Risk Matrix" by Portage Network. CC BY-NC 4.0.

Note: Research contexts where additional ethics review processes and approvals are required may result in data needing to be restricted regardless of the results of data disclosure risk level assessments.

Obtain consent for data retention and deposit according to data disclosure risk levels

Data disclosure risk levels	Low risk	Medium risk	High risk	Extreme risk
Consent requirement	Notification of data retention and deposit for future use	Notification of data retention and deposit for future use Option to opt-out should be considered	Notification of data retention and deposit for future use Formal opt-in for data retention and deposit If possible, provide options regarding areas of future research (e.g., use for this study only, only for studies in this subject area, or for any use).	Confidentiality will be maintained for as long as the data exist. Data will not be shared beyond the research team.

Adapted from "Human Participant Research Data Risk Matrix" by Portage Network. CC BY-NC 4.0.

References and further guidance

Portage Network Sensitive Data Toolkit for Researchers: