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.
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..
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.
Hi everyone, just to provide an update. First, thanks for all your help. I sent a letter to the DOJ probation officer after I attempted to collaboratively bring up my concerns (sharing of data is only one of many). It was apparent they (UB) had already made their decision to not listen to me and told me that I was wrong in thinking that our project was a collaboration. University at Buffalo VP told me "This is a dictatorship" yea, that really happened. I couldnt believe it. The next day I wrote a letter to the DOJ probation officer with a number of concerns supported by facts. UB responded with a defaming letter (I think I was targeted personally at least 15-20 times). The best one was that they alluded to the fact that I cannot have the data because Im on a lawsuit seeking damages and I might change the data. Needless to say, the DOJ is mighty angry with their behavior. We have a meeting at the DOJ court building on Tuesday. I was told I just have to sit and listen. I am relieved and feel positive about the outcome. I could write a book about this craziness.
Wow, that's incredible. Hope the DOJ meeting goes well today!
We had our meeting yesterday. It appears that UB management was trying to claim that their policy's (in this case conflict of interest with me being a collaborator on the project and also a plaintiff on a personal suit againstTCC) was trying to "Trump" the DOJ awarded project (which specifically states that this project was to be a collaboration- with me). the DOJ made it very clear that I am to be included and that UB would have to find away around their policy to include me . Sharing of the data with our organization is a must. It really struck me how arrogant UB was- I mean they felt that their policy would supersede the the Judges order. Here is today's response from UB: Please see the link below to UB’s Conflict of Interest policy which satisfies the requirements of all federal granting agencies including the NIH and NSF.
It was written to be consistent with the PHS regulations, NYS Public Officers Law Code of Ethics, and the Research Foundation of SUNY Code of Conduct. Shown in the other links below. UB applies this policy to all sponsored program funding.
So- my question is- if this is UB's policy they either have to change their policy or withdraw from the study, right? Another important question came up- we are one year into a 2 yr study, why wasnt this conflict of issue raised at the beginning? Why are they bringing this up now?
Well done, Jackie! It sounds like things are headed towards a just resolution, no? That's what I gather from "that UB would have to find away around their policy to include me." Another front you could open, should you need to is about the intellectual property of the grant, as you wrote it! saying that they are infringing on your intellectual property may be a way of appealing to a set of rules that is external to the university, although having them change their policy and share the already collected data seems optimal in some ways. There might not be need to throw extra fuel on the fire if DOJ is already dictating that they need to include data sharing with your org. Thanks for your work and determination!
Thanks Nick. I'll have to think about that avenue. You are correct, there's so much more I can do here, but I could also alienate them (UB was directly awarded the $11M health study). We want to preserve any relationship with them (however, they are making it difficult)
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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.
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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