I am a former PhD student at UQ. I performed analysis for a project between UQ and the University of Adelaide.
After I complained about being excluded from the paper, UQ's Pro-Vice-Chancellor (Research) sent me a letter admitting there was no formal, written agreement for the collaboration.
My question: Is it normal practice for two universities to share exome data without a formal agreement in place?
I would value your thoughts.
I'm clearly coming to this after some editing to the post. I echo the comments to try this on academia.stackexchange.com as they have a lot of experience with dealing with questions like this.
In direct answer to the question - yes, it is completely normal for collaborations to happen between universities without formal collaboration agreements - although I get the impression there is more going on here than just a striaght forward you said you'd do some analysis for them, and now you are not being acknowledged.
Thank you for your honest feedback.
I understand that informal collaborations happen. But this was an NHMRC-funded project involving patient genomic data.
Without a formal agreement, the patient's consent was not fully informed. They did not consent to their data being used in an undocumented, informal collaboration.
I also asked the question at Academia Stack Exchange as suggested.
I've added a more detailed answer at Academia Stack Exchange. The real answer is that it depends on the precise wording of the consent form. But many consent forms limit the use of the data according to the goal of the data analysis, rather than the person doing it. Some consent forms even grant what is know as "broad consent". This means that reserachers can basically do whatever they want with the data.
I’ve been thinking over this.
Based on the wording in the original letter (I’m not a lawyer) it seems there was indirect acknowledgement from the university that the access was unauthorized.
If that were true, the institution and PI has a duty based on their signed agreement to inform the NIH within 24 hours.
And hopefully this procedure was followed correctly.
We do not know the complete story in this case, but this appears to have been going on for 10 years, which is strange.
Based on OP's comment on academia stackexchange their contribution occurred at the sequencing/analysis stage. The data was likely not in dbGaP at that point and they had direct access to it.
After I got the letter from the university, I did not use it. I was inexperienced, and when I saw it was marked 'Confidential,' I felt I had no choice but to accept that I was powerless. It still hurts to see the paper published and to feel that no one cares. To clarify about dbGaP: I had access to dbGaP from the beginning of my PhD to use it as practice for my code. After a few months, the sequencing of the samples was finished, and I started analysing them. I do not think dbGaP data was used in making conclusions in the paper. I was surprised the authors mentioned access to it in the acknowledgements section.
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unrelated to bioinformatics, you should ask https://academia.stackexchange.com/ ( and black out the names...)
Thank you. I will try there. I have already removed the screenshot from my post as suggested.
Thank you for the suggestion.
Are you hurting your case by presenting this, including all names (if this is a real case - I have no opportunity to investigate this)? In any case, it looks more complicated than just being left out as a co-author of a paper. If you made a relevant scientific contribution to the paper, you should be listed as a co-author or acknowledged at least. This is irrespective of any written agreement. If this is your main concern, you may want to write to the editor of the journal directly.
Thank you. I agree: if I contributed, I should be acknowledged, agreement or not. I did contact the authors and the journal. I was rejected. I have the evidence. The missing agreement is not my main claim. It is the reason the project was never properly governed. I am posting because every private channel failed for ten years. Thank you for your concern.
I’m not sure exactly what you did. Based on what you posted it seems like strategically a poor decision.
The claims you made in your letter, should they be verified, amount to potential academic misconduct at minimum (for multiple parties) if not retraction of whatever relevant publications are involved.
What you should have done is contacted the authors of the manuscript requesting a correction and inclusion. And if thereafter you were refused, reach out to the editor of the journal for the article in question.
All of this said you need to have tangible proof that you contributed things and that those things are directly present in the publication.
Thank you for your honest feedback. I understand why you think this is a poor strategic decision. But I have tried every private channel for ten years. I contacted the authors. I contacted the journal editor. I was rejected. I have the evidence. The missing agreement is not my main claim. It is the reason the project was never properly governed. I have tangible proof of my contribution. I am not posting it publicly to protect myself. I am posting because I have nothing left. Thank you for your concern.
I have removed the screenshot of the letter to protect myself, as some of you suggested. The letter is real. I have it. I am not posting it publicly.