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USC Vs. UC San Diego In Fight Over Alzheimer's Research
New submitter BVBigelow writes: In Southern California, a legal skirmish between USC and UC San Diego is escalating into into a full-blown fracas, replete with restraining orders, loyalty oaths, and accusations of computer piracy, intimidation, and interference in federal grant awards. The two universities are fighting over control of an Alzheimer's program that coordinates about $100 million in research grants. The lawsuits began after USC recruited scientist Paul Aisen from UC San Diego, where he has been director of the Alzheimer's Disease Cooperative Study since 2007. The study has been based at UC San Diego since 1991, and and UCSD expected to retain control. But Aisen's team took root command of the computer system (including 24 years' worth of clinical trial data) and won't give it back.
All that clinical data better be on tape somewhere amirite?
Can't they just settle this with a football game?
“He’s not deformed, he’s just drunk!”
a SoCal saying.
I know there's a crap ton of money involved, but I would think that since the study was based at UCSD, that it would stay there, regardless of where the head of the study goes.
They seem to have forgotten who's in charge of the research.
I don't doubt that specific strong-personalities are actually the ones fighting.
I expect that in the end, the data will be copied and both institutions will continue-on. The institution that lost the staff member probably has some legitimate claim to the data since the staff member was not working alone and was using university resources to pursue the work, and the staff member that left has legitimate claim to the work that he has done.
Do not look into laser with remaining eye.
UC San Diego alleges that Aisen and at least eight colleagues (who have joined Aisen at USC) changed computer passwords to retain their custody and root control of the ADCS system, essentially locking out UCSD from administrative control of the Alzheimer’s study.
Courts have traditionally taken a dim view of that strategy. Hostage taking is almost never the answer, regardless of the nature of the dispute. Had he taken a copy of the database, that would have been more palatable. Something is always hinky when one person sets themselves up as the lone guardian of data purity.
That's our life, the big wheel of shit. - The Fat Man, Blue Tango Salvage
The data was paid for out of taxes. Federal rules on privacy apply, but any researcher authorized to see the data by the feds should have access to it.
I should use this sig to advertise my book ISBN-13 : 978-1501515132.
Just running off with the data and going "tee hee"... I don't get how that works if you can put your hands around his scrawny neck.
I suspect UC has less of a claim on it than they thought or the court case to get the professor to give the data back is going to be short and hilarious.
I've decided to stop wasting my time responding to AC trolls/sockpuppets... so if you want a response from me... login.
And 100 years from now, will anyone even remember this?
The issue is a general one with research. Who owns the research project and the grants – the institution (UCSD) or the researchers (Prof. Aisen and his team). [disclosure: I'm a university professor myself]
To me it seems clear that Prof. Aisen's research is his, and if he moves universities he takes his project with him (especially the data). It's true that formally the university administers the grant (the granting agency write them a check, equipment bought with the money is university property etc). But the project itself is an intangible concept, which runs with the people and not with the university.
Since grants are formally made to institutions, of course approval of the granting agency is needed to move the grant, but this should generally be routine. It's not like USC lacks the ability to administer this research. In particular, I'm quite troubled by the idea that "the original grantee institution [may] not wish to relinquish the grant". Grant-making decisions are primarily based on scientific criteria -- the potential contributions of the researchers -- not on the identity of their home institution, so this rule seems preposterous to me. "UCSD wants to resume its management of the study" -- but I doubt anyone from UCSD other than the research team actually managed the study – by definition the PIs manage the study. UCSD provided administrative services (financial oversight, for example) and facilities (for which the grant is charged overhead), but this is not a unique contribution of UCSD.
Some grants are political (Congressional earmarks) and then it may make sense not to move them if the researcher moves, but NIH grants shouldn't work like that (and in any case these earmarks are illegitimate).
I don't understand why this data isn't just shared publicly to anyone who cares to inspect it. What's gained by hiding it?
(1.21 gigawatts) / (88 miles per hour) = 30 757 874 newtons
I don't understand why this data isn't just shared publicly to anyone who cares to inspect it. What's gained by hiding it?
Alzheimer's costs the US economy over $100B/yr, and that amount is likely to soar as the population ages. If a university finds a cure, or even a prevention, they stand to reap billions in patent license fees. The stakes here are very high.
It's medical research. There's insanely stringent restrictions on how you can release it. Research scientists get special permission (with patient consent) to have personally-identifiable medical info, because it's necessary to their research, but it's so detailed that releasing it for public consumption would be pretty darn bad for the subjects in the study, and they didn't give consent for it. It would also drive research subject recruitment rates way down if that was mandated in the future
This distinction is also key to one of the Republican oppositions to environmental research. "The EPA can't make policy decisions on any research that doesn't completely 100% open all its data to the public"--who can argue with that? Problem is, that would mean releasing the entire medical history of all those patients. No thanks. And again, requiring patients to give consent to full public release of their medical history is a great way to discourage people from participating in any environmental-issue-related medical study.
Is this the new weekly version of the "You cows!" thing?
A full blown fracas? Wake me when it becmes a donnybrook
The shepherds did so well protecting the flock that the sheep no longer believed that wolves existed.
Very sad.
Most ADRCs use drive to drive backups btw. With multiple site locations. We get quakes here.
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I think you mean the pharmas.
They want you to get a "cure" that keeps you functional but doesn't cure you. Very few scientists want that. They want to both cure it and find out how to turn off the triggers or ameliorate them.
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Additionally, you can't share the data gathered from living subjects or even deceased individuals when the data includes their DNA and detailed medical history.
There are strict protocols about this.
Which is why I laugh when vendors try to sell me "cloud solutions".
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No one's hiding it but ownership is the issue. UC San Diego started the Alzheimer’s Disease Cooperative Study and then USC poached UC San Dieg's principle investigator. If this was happening in corporate sector Dr. Paul Aisen would be hit with huge lawsuits. He should pray to his lucky stars that this is just an academic hissy fit.
I agree on the studies that are currently ongoing -- the grant was awarded to the PI, not to the institution.
But this whole question of who 'owns' the data from research has been coming to ahead for a while. Common arguments are for one of:
* The PI
* The PI's institution
* The funder
The problem is that for years, the disposition of the data was never spelled out clearly in the RFPs. Most people had never heard of a DMP (Data Management Plan) until NSF started requiring them a few years ago.
So ... we get into the problem that because each grant can come up with a different DMP, we have to look to those to see who is the gatekeeper of the data. In some cases, the data is handed off to an IR (Institutional Repository; typically something managed by the library), and if that's spelled out in the DMP, then I'd say that the institution keeps control of the data. In some cases, it all needs to be sent back to the funder (NASA instrument contracts are like this, where the 'final data' must be deposited back to an ARC (Archive Resource Center)). But there might be other ones where the PI is personally responsible for access to the data.
Personally, I prefer the IR or funder, just because most scientists have no clue what they're doing when it comes to archiving data. See Data Sharing and Management Snafu in 3 Short Acts. You also run into problems when PIs retire / die / move / whatever. ... but I don't deal with medical data where you need to have an active gatekeeper (IRB, Institutional Review Board, or similar) where you might need someone with better understanding of the data.
So anyway ... without there being something specifically in the grants, the institution likely can lay claim to keeping a copy of the data ... but I don't know if they can necessarily stop the PI from taking a copy with him, or even the server holding it (if the hardware was paid for through his current grants). They *might* be able to get the IRB involved, and insist that they need to review what's being done with the data that's being moved.
In this particular case, though ... it's not only an NIH grant (which are clearly to the institution), but the PI has only been there for 8 years -- so he's taking data that was collected by previous PIs before him. I'd say that his trying to take all data from the department, and not just that which he was PI for is a rather sleazy move.
(disclaimer : I'm one of the moderators on StackExchange's Open Data site )
Build it, and they will come^Hplain.
Certain animated avian characters: http://3.bp.blogspot.com/-wX_N10DWMG0/VbjnPV43ISI/AAAAAAAABDk/p8lLwJF_i0I/s1600/mine%2Bmine.png
I wish someone would do the 'children... please... if you squabble like this, you'll both get nothing' thing.
John_Chalisque
If he is PI, he should have the data.
If taxes paid for it, the data should be available to anyone the feds approve to view the data, which is generally determined by the PI.
So yes, it's an academic hissy fit, that one university lost a PI on a government funded study and the project moved with him as it should.
My wife was in the position of running a government funded education study. Education departments in universities know nothing about securing or protecting data, so it fell to me to do the crypto and backups. The alternative was to keep it all on paper in a locked box.
I should use this sig to advertise my book ISBN-13 : 978-1501515132.
I don't understand why this data isn't just shared publicly to anyone who cares to inspect it. What's gained by hiding it?
Alzheimer's costs the US economy over $100B/yr, and that amount is likely to soar as the population ages. If a university finds a cure, or even a prevention, they stand to reap billions in patent license fees. The stakes here are very high.
If the disputing parties or a family member develops dementia (high probability) and if the disease could have been mitigated or cured by the sharing of data the stakes are a LOT higher than a dollars. What good is Billion dollars if you can't recognize a family member or even remember your own name. Stupid people.
The data is probably already anonymized.
Because the "data" contains medical information that's illegal to share in a raw form.
Learn to love Alaska
sadly, the totality of data on a longitudinal basis means if you have any of the keys you can fairly accurately identify. some trials ran into that problem with people with certain rare disorders. the existence of the allelles mean we know it's one of maybe 200 people in the world, so any of the other data deanonymizes it. had to remove data submissions in certain cases, as that would go against protocol.
It's a problem only recently realized, and partly brought on by the nature of people who become cases and unknown disease status. people with disorders or relatives of these people tend to volunteer for studies, so you get overrepresentation without realizing it, and rare disorders make for a very high probability match.
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these two entities have forgotten the details about who killed who,
They'll take you to school.
UCSD—not Aisen— “is contractually obligated by its agreements with the NIH and research partners to maintain and safeguard data from clinical studies conducted by ADCS. ”
The computers in question, I believe, are in the cloud (if I remember the Aisen et al filing correctly.)
Hey guys, the cloud is secure right? Lets put our accounting details in there too and not have backups.
That is just silly reasoning, you are taking a part out of the whole system. The university supported him. deal with it.
Oh I see - like people's health records and such.
(1.21 gigawatts) / (88 miles per hour) = 30 757 874 newtons
Lets make this fair. Each university picks champions. They go into a room, whoever walks out... gets the research project.
In God we trust, all others require data.
I am certainly aware of the rules, and event quoted this very rule in my comment. I was arguing that some ways of implementing them are wrong. Deal with it.
I actually think you should start with the ownership.
I believe that, like the research results themselves, all the underlying data of publicly funded research belong to the general public. The researchers must have a right to keep their data secret for a while so they get first dibs to produce results from it, but eventually everybody else should get to try their hand at the data.
Several different agents should work on this. The granting agencies should insist all research data is properly curated and hosted for posterity – as a benefit to the public who paid. This should include the raw data, intermediate products like scripts and code, and the final processed data. The journals should insist on the same thing, this time for the benefit of science (allowing others to verify the results). In all cases there should be an appropriate embargo period, depending on the field.
By the way, I think of your code as falling under "research results" (you developed a method of handling the data) more than "research data".
That certainly is not universally true.
The subject privacy rules also grant access to people not institutions. Even if an institution has the data, it doesn't mean the institution has people who are authorized to see the data. the customer (the government probably) has an interest in the data it has paid for being in the hands of the authorized investigators. Principally the PI, which is why that person is called the PI.
I should use this sig to advertise my book ISBN-13 : 978-1501515132.