Back when the AIDS epidemic first hit Germany in the mid to late 1980s, I was working as a lab tech in a leukemia and immunogenetics research group in Tuebingen (south of Stuttgart). Now there are are few things that American readers need to understand before I tell you the rest of this story:
1. The university where I was working is known as a "docents' university" (die Dozentenuniversitaet). That means that the different department heads rule their departments with de facto powers bordering on the feudal.
2. My immediate boss and the titular speaker (der Sprecher) of the working group were constantly at odds.
3. I was an obscure nobody in the working group, i.e., a mere serf in the hierarchy.
Among other duties, my boss was serving as a "doctor father" (der Doktorvater) for a medical student. That meant that he was the faculty advisor for that student's clinical research project thesis necessary to complete the student's medical studies. The student's project was to test the anti-HIV antibody status of approximately 200 German hemophiliacs; to test their T-cell surface markers; and to correlate the results with their clinical status. (As you will recall, one of the groups especially susceptible to HIV infection in the early years of the epidemic was hemophiliacs treated with HIV-contaminated Factor VIII.)
My part in the work was to help that medical student do those 200 Western blots according to a procedure set up by a biochemistry student doing his "civilian service" (der Zivildienst) in our laboratory. In other words, the "civilian service" student was a conscientious objector working in our laboratory instead of doing military service, and he had worked out the polyacrylamide gel electrophoresis (PAGE) procedure for us. (Germany has a universal draft for males. They either go to the military or do "civilian service". Those who refuse to do either go to jail.)
Now, the T-cell surface marker work was done by another lab tech in the clinic where we all worked because that was where the flow cytometer was. The medical student completed the clinical examination of the patients up north in Bonn at that university's hemophilia clinic. Our boss arranged for the medical student and me to do the Western blots in the basement of the Max-Planck-Institut building on the north side of Tuebingen. It was no big deal for us to set up our equipment in a corner of the basement. Well, it was no big deal to us. In the AIDS hysteria of those days, the cleaning ladies had refused to go anywhere near HIV, so we were permitted to do the work only in an area where they never worked anyway. With no running water in that corner of the basement, we schlepped in our reagents from and took all of our trash back to the clinic.
Once we got set up, we started a marathon testing spree from 8:00am one Friday until about 4:00am Saturday morning. We mounted the Western blots on backing paper according to each run. I had presorted the specimens according to the names of the patients in alphabetical order to make it easier for the student to find what he needed when he needed it. Then I put the sheets in a ring binder and wrapped the ring binder in aluminum foil; Western blots are light-sensitive and can fade over time. Then we tore down our equipment, loaded it back into the trunk of the student's car, and went back to the university clinic with the Western blots in hand the following Monday after we had got some sleep.
On one hand, it had been necessary to do the Western blots outside our laboratory in the clinc because the speaker had issued orders that we were NOT to do HIV testing in his clinic for reasons unknown to us serfs. On the other hand, the medical student's proposal for the project already had been approved. Everybody knew that the PAGE portion of the work required using an HIV-positive cell extract preparation to provide the antigens on the nitrocellulose paper for the Western blots. We also had used serum from a known AIDS patient as our positive control. But NONE of this work was done in the speaker's clinic in deference to his orders.
The day came for our boss to travel to Israel for an international scientific conference. Prior to our boss' departure, a colleague had dropped by from the flow cytometry lab to find out why his name was not on a paper recently published by the group. The answer was that, although the technician from our lab had done her cell surface marker work on his machine, he had not contributed to the actual research work. The colleague became a bit testy with our boss, and our boss responded.
The next day -- with our boss safely out of the way to avoid any personal confrontation and with the medical student attending a workshop in Bonn -- that colleague from the flow cytometry lab went to the speaker to accuse our lab of flouting the speaker's direct orders. Very shortly after that, the speaker's emmissary was looking through our lab with the colleague. They asked me where the Western blots were, but I honestly did not know, having handed them over to our boss. They went away none too happy with me.
As soon as they were out of earshot, I ran to another lab where I knew that another researcher kept a spare key to the boss' office; retrieved the key; opened the boss' office; scanned the chaos; spotted the binder in aluminum foil; grabbed it; and stuffed it into my student's backpack. Then I called the office of the vice-provost to ask what the hell was going on. The vice-provost told me that I must hand over anything that the speaker demanded of me in "his" house -- regardless of any concerns about the patients' rights to confidentiality of their medical data. So then I went to our union steward in the electrician's shop. He listened impassively to this crazy American. Then he said, "It's their problem to sort out. They need to leave you out of it."
That evening I walked home with the Western blots safely stashed in my backpack just in case the speaker's emmissary decided to rifle our boss' office when he was not there (No, I had not told the union steward about that part.) The binder fit nicely under the winter longjohns in the closet in my dormitory room. Then I telephoned the boss' wife at home to alert her to what was going on in her husband's laboratory while he was out of town. Then I telephoned the medical student in Bonn to tell him NOT even to set his tippytoes in the clinic until our boss had returned to confront the accusations. The medical student could rest assured that I had his Western blots safely stashed away.
The next day, the speaker's emmissary called us lab techs onto the carpet to press us for information. At one point, he wanted us to tell him which of the patients had AIDS and which did not. I responded that, even if I were a licensed clinician qualified to make any diagnosis whatsoever, I certainly would not do it on the basis of one Western blot in the absence of other clinical data. Anything else would amount to irresponsible speculation on my part that could result in irreparable harm to the patients' right to confidentiality. Besides, there was the chain of command to respect in this instance. As far as I knew, the medical student had been working on his doctoral thesis as approved by the university administration. I would appreciate it, therefore, if the emmissary would put any questions about this matter directly to my boss upon his return.
The emmissary fumed a bit more, but the other lab techs, all German employees more susceptible to the spectre of being fired than I was, had caught the drift of my argument and remained silent. They did not want to leave their jobs without a good reference. That was understandable given that the worst that could happen to me was that a German policeman would march me onto a plane back to the USA after my visa had been revoked for some bogus reason.
In the end, our boss returned from Israel. I handed over the Western blots to him in person. The medical student proceeded with his doctoral thesis and graduated on time. The speaker fumed a bit more. In the following weeks, I decided to throw in the towel and go home. How can any sane worker bee function with pointless political feuds contaminating the group? Some days it was like watching a "Spy versus Spy" cartoon in an old issue of Mad magazine. It was time to get on with something else in life.
So, now you know a good example that illustrates why American researchers are required by Title 21 of the Code of Federal Regulations (21 CFR) to disguise the names of test subjects in their submissions to the U.S. Food and Drug Administration. How the clinician decodes the names in case he needs them is his business.