Responsible Conduct in Data Management
 
  Title: Data Archiving Scenario
   

Characters: Jesse, Graduate Assistant
                      Rachid, System Administrator
                      Iris, a Researcher

INTERIOR, COMPUTER WORKSTATION, IMMUNOLOGY LAB

Jesse is deleting files. Rachid is installing a zip drive on another computer. Iris is primping a monkey plant .

JESSE
Every time I push the ‘delete' key I feel like I'm wiping out whole populations!

RACHID
So don't push it.

JESSE
I got to. It's all about sick children. Confidential

RACHID
Don't you guys have to keep the data in case someone asks you to repeat the experiment?

JESSE
”Study.” They're called “studies,” Rachid. Yeah, some of the data is archived, but the stuff I'm deleting now, the names and social security numbers, get destroyed.

RACHID
This was a bout Givling-Taylor Syndrome, right.

JESSE
That's right. Little kids with the sheathing around their nerves all degenerated.

RACHID
Any hope of a cure?

JESSE
They're working on something. Floro-immuno flossing.

IRIS
Fluoro scopy .

JESSE
… fluoro scopy. Anyway, it looks kinda promising.

IRIS
Very promising in some cases. It will probably only work on certain types of sheathing. They found that out from the study, actually.

RACHID
So won't that information be valuable if ever a cure is discovered? You'd already know in advance which kids it would work on.

JESSE
Yeah, but if we archive the personal information with the data, then all kinds of other researchers will have access to it down the line--and they're not bound by the confidentiality agreement.

RACHID
So if a cure is ever found, all the kids would have to be tested again?

JESSE
I guess so – unless we tell the parents what group their children belong to so they can monitor developments in fluoroscopy treatment.

RACHID
And what would they do? Subscribe to the New England Journal of Medicine  ?

JESSE
That's not very realistic. The kids would have to be re-tested – which is a nuisance, because the test is kinda invasive..

RACHID
And the parents aren't gonna want to do it, too, because it's been done once by you guys and no treatment was available.

JESSE
Yeah but…

RACHID
So if a cure is ever found, the kids would have been better off not being part of the original “study” that helped find the cure?

JESSE
Iris, should we be deleting this stuff?

IRIS
You signed the confidentiality agreement. You know what it says.

JESSE
Yeah, but.

RACHID
I'm glad I just work on machines.