Institute of Aviation Medicine, Farborough
When I worked there in the early 80's one of the ethical dilemmas I was told about was about 3rd Reich records from experiments on concentration and death camp victims. They were deiliberately exposed to hypothermia, anoxia and or included in rich oxygen atmospheres and then set on fire. These were attempts to improve treatment of victims who were sailors, pilots, etc who had suffered from the above conditions, usually as a result of combat. They did not anaesthetize the test subjects as this might have created "unrealisitic" results.
This data was recovered at the end of the war and was available to use. Using it would have saved lives but it had been gathered and created in manners that were totally unacceptable. Multiple organisations had access to this data and I cannot comment on what actions were taked by others. I was told that the IAM reproduced the results using pigs which were anaesthetised. I never saw the original test results nor the reproductions and will not comment on the exactitude of the above statements.
I was also informed that the IAM used the 3rd Reich results to guide the tests to reduce the number of tests that were required to help protect aircrew in anoxic and rich oxygen atmospheres - that always struck me as hypocrisy; look we will do these so as not to use this evil data but we will reduce our testing based on the same data.
This ramble is meant to help convey my own personal beliefs that health and similar data will be found in the wild, will be used to both make money and benefit individuals and countries (reducing health care costs and having healthier citizens should do that) and that I would personally rather give my data away in the hope and expectation that it may do some good (sleep apnea, type II diabetes, male, mid 60's, very severe psoriasis and psoriatic arthritis) than die feeling warm safe and comfortable that no-one knows who I am.
There are always uncomfortable and unpleasant truths in history, as many in medicine as any other subject. Some may know who Henrietta Lacks was. We still abuse bits of her for convenience, suitability and any other damn reason we find appropriate. As an aside I find it dryly funny that so many complain that insufficient testing is done on minority groups when she herself was of African origin in USA.
The greater good can be used to justify the acts of the 3rd Reich. It can be used to justify using the data of the 3rd Reich. We were all bloody happy to use it post WW2 (operation paperclip etc) but we deplore how it was created. For me - in the UK - make the data freely available. If you use it you may not make profits from it just as Astra Zenica has done. That is not a tight enough process; it has a sunset clause but it could be made better. I pay my government to handle group problems for me. That is their job not mine. Hey, HMG - put the right laws in place on using the data and then, and only then, go to opt out. You've already done it on organ donation after death, now do it on health information prior to death.