Section 4 – Data Deposit, Sharing, and Archiving
Data Access Terms and Data Use Agreements
Niloofar Hooman; Lucia Costanzo; and Amber Gallant
What would make it ok for us to share our data?
In addition to a Data Access Committee, you may also need Data Access Terms and Data Use Agreement Template for medium and high-risk data. Data access is a crucial long-term consideration for community organizations deciding where to deposit their data. To determine how and by whom data will be accessed, it is important to consider who will authorize access, maintain the data, and be allowed to use it. Additionally, setting up systems for how access will be given or denied is essential. This could include technical processes (how do people get an account set up? How will data be transferred?) or governance systems (do we need to have a policy for this? Who has authority to create an account or approve a request? How does this impact our insurance?).
These considerations can be formalized into Data Access Terms and then a Data Use Agreement. Both templates are modelled off several existing data access terms used by public data repositories, including the European Genome Archive and ICPSR.
Data Access Terms
This tool gives you, as a community member and researcher, a template for creating your own Data Access Terms, empowering communities to manage data access while ensuring ethical and responsible use by researchers and institutions. This framework respects the unique needs and values of community data holders, striking a balance between transparency and accessibility and protecting confidentiality; cultural integrity; and community ownership. It equips community members with tools to ensure that data aligns with shared objectives and respects collective rights. It guides communities in setting up clear terms for how data will be accessed, outlining considerations like:
- How you want to determine if users are eligible (Are they part of an institution with an ethics board? Are they a member of the community? What are their plans for the data?)
- Security measures (encryption and other protection)
- Conditions for reuse (for example, can this data be used for all purposes, or just improve refugee housing outcomes?).
It can be customized to reflect each community’s governance policies and values, facilitating the responsible stewardship of community data in research and institutional contexts.
Data Use Agreement
Once you have determined your access terms, you can then create your Data Use Agreement. Anyone who wants to access the data will be required to sign this agreement with you. Along with personal contact information, the Data Use Agreement lays out:
- Purpose of use: Data users agree to only use the data for the research project or purpose described in their application, which they need to write out in the Data Use Agreement. This is important to ensure users are not acting in bad faith.
- Confidentiality and Security: Users need to keep data confidential and not try and identify people in data that was made anonymous. They might need to comply with IT security measures such as encrypting their hard drive or destroying data once they’re done with using it.
- Compliance with Institutional/Organizational Policies or Community Protocols: Existing community protocols that are already included in bylaws or public materials can be included or linked to, so data users align with the intentions of the group. For example, folks in the Vancouver Area Network of Drug Users (VANDU)’s Research 101 : A Manifesto for Ethical Research in the Downtown[1] would be a protocol that group could link to in a Data Use Agreement.
- Publication and Acknowledgement: Your Data Use Agreement should also include details on how publishing will work, how data and findings will be shared back, and how the community’s contributions should be acknowledged.
- Legal Details: Like a Memorandum of Understanding (MOU) or other agreement, this template also includes information like who is allowed to use the data, limitations on moving data, and how the agreement might be stopped if necessary.
Small Org: Smaller organizations might want to work with the research team to create a simplified version of the data access agreement below. If data is stored in a university repository, this would be setting up paperwork/ an agreement a researcher would need to sign to see and use the data.
Large Org: This sets up some systems that the organization could follow if they are holding data themselves long-term, or make sure there are ways the community can access data if it is being held by a data repository.
No Org: Researchers may need to work with a data repository (e.g.: a university or a sponsoring community organization) to hold the data. However, research participant partners could be involved in drafting terms and may commit to being part of a group that is contacted in cases of requests to use the data.
References:
European Genome-phenome Archive. (n.d.). The data access agreement. https://ega-archive.org/assets/files/Data%20Access%20Agreement%20EGA%20and%20Application%20Form%20-%20TEMPLATE.docx
European Genome-phenome Archive. (n.d.). Request data access. https://ega-archive.org/access/request-data/how-to-request-data/
Inter-university Consortium for Political and Social Research. (n.d.). The ICPSR authentication and authorization rules. https://www.icpsr.umich.edu/files/datamanagement/preservation/policies/authrules.pdf
Access an editable data use agreement to adapt to your project:
- Boilevin, L., Chapman, J., Deane, L.... et al. (2019, March). Research 101 : A manifesto for ethical research in the Downtown Eastside. https://doi.org/10.14288/1.0377565 ↵
