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Question:Where can I find models for community-university data co-ownership?

nshapiro asked on September 27, 2017 18:18
144 | 2 answers | shortlink

I'm looking for precedents upon which to base language about how data can be co-owned by communities and university researchers in environmental or health studies (especially when there is personally identifiable information attached to the data).

I found this website that lists co-ownership as a key value of community science, but not really any rubrics to follow. Hopefully there are a lot of great examples out there and we can make a wiki with these resources.


legal data-collection data ip community-science



kanarinka 20 days ago

A good model that I just heard about is to build this language of co-ownership into your IRB. This then functions as a document that you can refer back to. You should also double check it against your university's IP policy which tends to be that the institution owns everything.

nshapiro 20 days ago

Thank you, super helpful! do you have any examples of what that co-ownership language might look like?

gretchengehrke 19 days ago

Hi Nick, I can put you in touch with folks Lisa Rasmussen who put together a Citizen Science Ethics conference where co-ownership and equitable partnerships was discussed a lot, and with Sacoby Wilson and Omega Wilson who have co-developed a proposed protocol for equitable project management. Those ideas would all be relevant for the start of a project though, rather than ameliorating this situation. It sounds like the either the researchers need to file an amendment with their IRB, or the community group needs to directly appeal to the IRB.

liz 5 days ago

Would anyone be interested in facilitating a session on this at the Barnraising? @jjcreedon @nshapiro @gretchengehrke etc?

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2 Answers

I'm in a situation where the university wont share data with our community group because we are not covered by the University's IRB policy. We want access to the data (and co ownership too). In their contract with the DOJ ( in this case) it states that we have access to the data. If the University doesnt share the data with us, they are in breach of their contract. This obviously was a big oversite on their end. Can we be added the the university IRB after the study has begun? any other suggestions are welcome..

gretchengehrke 19 days ago

Hi Jackie, you should be able to have the IRB amended. Are the researchers willing to file an amendment with their IRB?

jjcreedon 18 days ago

okay, really good info. Ill find out today (meeting at 3pm)

jjcreedon 18 days ago

I would like to ask for co ownership, id that too much of an ask, do you think? considering we are well into the project aloo- we not only want access, would like co ownership. what do you think?

liz 5 days ago

Hi @jjcreedon , how are things going now?

warren 5 days ago

It's ironic that IRB processes, which come directly out of the informed consent clause of the Nuremberg Code, could be used to actually withold information from a community. Informed consent is item #1 in the Nuremberg Code:

Required is the voluntary, well-informed, understanding consent of the human subject in a full legal capacity.

I wonder if any case could be made in that vein, although I have a lot of problems with how IRB has calcified over the years to really objectify "subjects" despite its still-important ethical origins.

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Hi Nick I just came across this great network and resource, maybe you already know of it? They created a model which they term as "Community Researcher Contracts", developed by people based in South Africa who conduct research with indigenous peoples - this is how they describe it: In our ongoing work, we are considering how to ensure more collaborative and reciprocal research practices through “community-research contracts,” which we interpret as technology towards a more situated open science. These contracts are between the applicants wishing to conduct research (e.g. universities and non-governmental organizations) and indigenous communities. The aim of the contracts is to clearly state the roles and responsibilities of the various actors, to specify the proposed research, how the research would be conducted, how the information would be collected, analysed and used, what products would arise from the research, and how such outcomes would be shared. Our team sought to develop contracts not written within the dominant language of western biomedical research. Rather, community-researcher contracts are based upon indigenous peoples’ (in this case Nama and Griqua peoples) ways of knowing as producers of knowledge, thus the contracts enable indigenous peoples’ to define the conditions under which their knowledge can (or cannot) be accessed, utilised, and shared. The full text is here: https://ocsdnet.org/principles-and-practice-in-open-science-addressing-power-and-inequality-through-situated-openness/#_ednref1

hagitkeysar 10 days ago

Some more examples on initiatives can be found here: https://responsibledata.io/indigenous-peoples-responsible-data-readings/

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