[jeffbee]

Imagine I'm a dead guy from the 19th century?

[chaps]

They have much more than just 19th Century records. Where'd you get 19th century as an upper bounds from?

It seems hard to find date ranges for what they exactly collect and store, but I found this relevant line that gives 2002 as an upper bounds:

  "More than 99 percent of the 338 specimens from 1917–1969 were completely desiccated, as were over 72 percent of the 218 from 1970–2002."

https://www.ncbi.nlm.nih.gov/books/NBK236827/

Also, this gem:

  The JPC does not have documentation regarding any consent forms signed by patients or research participants whose data or specimens were submitted to the repository (Baker personal communication, 2011a). Such consents may have been obtained for clinical procedures used to excise specimens at facilities where people received medical care, but it is highly unlikely that they included notification that the specimens could be sent to a remote repository or used later for education or research purposes. Consents for research use may have been obtained for some materials gathered for the war or cohort registries, but the JPC has no documentation on these (Baker personal communication, 2011a).

[dekhn]

The last statement is correct- up until about 10 years ago, the vast majority of consent forms didn't explicitly state that the specimens could be reused for other studies later, that hadn't been consented to.

Now most consent forms explicitly call out the option of the data collector to share the data with more parties for further use beyond the scope of the original study.

[chaps]

Good to know, thanks. Though, that's still a pretty shoddy state of affairs.

[dekhn]

The deeper you go in medical data, the shoddier it gets.

[drozycki]

Can you think of a less obtuse way to interpret the comment? You may be missing a good point.