Learning Data Ethics for Open Data Sharing

Informed Consent

Activity: What Goes Into Informed Consent?

If you haven’t already, play Level 5 in the League of Data game https://lod.sshopencloud.eu/LodGame/ --It helps you think about the text you would add to the informed consent so you can share your data accessibly and reusably.
Source: SSHOC. (2020). Data Publication Challenge [video game]. Social Sciences and Humanities Open Cloud (SSHOC) League of Data (LOD). https://lod.sshopencloud.eu/
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If you plan to share your data, you should have added in a clause about data sharing in your informed consent form for participants. You should generally include information about who will be able to access the data, what the data will be used for, and any confidentiality protections you’ll make to the shared data. If you include this information in the informed consent form, you are following the Respect for Persons ethical principle, allowing your participants to a make better informed choice about the information they choose to provide you. Here are a few templates to help you request this sharing permission: Keep in mind that there’s always a risk that a participant or guardian doesn’t properly understand the extent of what they’ve signed in a consent form. Though you are technically doing your due diligence by getting a signed consent form, you should still consider measures to ensure your participants are aware of what will be happening to them and their data—such as providing verbal reminders throughout the process and writing important language in the consent form at a lower literacy grade level of reading comprehension.
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Activity: Assess Informed Consent Form statements

1. Download this worksheet entitled “Exercise: Assessing Consent Form Statements.” Read a few of the 9 statements in the exercise and consider how the statements affect implications for data sharing.

Might you suggest alternative ways to approach these statements?

2. Now download this worksheet entitled “Exercise: Consent for data sharing and reuse.” Review either the interview or the focus group statement template, which would be intended for reading aloud to the participants.

Is there anything you’d change about the wording to facilitate sharing and future reuse of the data?
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