Conditions, barriers, and burdens of participation | 1. Who can participate? |
How does our project actively address disparities in position, access, experience or resources? What explicit codes of conduct do participants agree on, and how are they determined? Do our website descriptions include visual aids and multimedia pieces?
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2. What are the barriers? |
What fees or conditions (tools, skills, software, time, training) are necessary for participation? How do these conditions shape the resulting data set? Do website descriptions include visual aids and multimedia pieces that explain in plain language the aims of the project, and how to participate? What forms of literacy (scientific, medical, digital, English language) are required?
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3. What are the burdens of engagement? |
What responsibilities or burdens are borne by participants? Were any of the services offered by the initiative previously provided by other groups, organisations or states? If so, are they still available?
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Benefits and distribution of results | 4. Who should benefit, and how? |
Who is the intended public, how can they benefit? Who is empowered or disempowered in the process, and how? What specific, local benefits (as opposed to broad, global claims) are provided?
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5. How are results distributed |
How can we make our products of better service to (wider ranges of) the public? Are results and tools open access? Are there other barriers to access? Are the products or end results, whenever possible, made from affordable, easy to use materials? Are the necessary instructions also shared to facilitate use?
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Representation and recognition | 6. What data are available to participants and publics? |
What are the enabling or limiting conditions of data access and use? Are data contextualised, and what further provisions are necessary for data to be intelligible or useful? Are participants compensated for their labour or other contributions? Is data access feasible for marginalised groups or for those living in resource-poor areas? What benefits (as well as costs and risks) does data access entail for them?
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7. Who do the data represent? |
Are members of marginalised groups involved in developing research aims and recruitment strategies? If working with members of marginalised or indigenous groups, are the participants co-collaborators on the project? Do they retain determination over final use of results, data or products? What markers of difference are used? How are they determined? How often are questions of representation revisited during our project?
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Trust, risk and global inequalities | 8. Recognise historic injustices, avoid repeating |
Do relevant histories of gender-related, racial and colonial violence inform our project, and if so, which ones, and how? Does our initiative publicly recognise how it may benefit from, replicate or operate within institutions of structural violence and exclusion, and take steps to avoid repeating this in the future?
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9. Think about trust and be trustworthy |
Who is likely to ‘opt-in’ to the project, and who is not? What role does trust play in this process? Are there pertinent histories of marginalisation that might influence the groups choosing to participate and those that do not? What can we do to increase the trustworthiness of our initiative in meaningful ways?
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10. Consider global justice |
Could the collection of samples, reporting of real time events, or posting of personal data online pose personal harms to individuals, particularly those in poorer regions of the world? Are there any possible harms that could materialise along the global socioeconomic gradient, of particular relevance for marginalised, resource-poor populations?
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