LET'S GET REAL!

Linda and Amanda, 1987

She loved babies.

I am writing this at the Hutch, as a break from my real work – “QC-ing” a bunch of forms. To” QC” is to do Quality Control on various official documents.  This activity involves either re-entering the data, then letting the computer system compare the original with your effort, or actually going over the form with the original data in hand, checking to see if all adds up.  Either way, it is pretty boring.   If any errors are detected, somebody with a pay grade far above mine does the fixing.  I take comfort in the thought that, if I weren’t doing this, somebody of real value to the outfit would be doing it.  All this caution and care is dictated by the granting agencies and whatever governmental committees or task-forces  are responsible.  I guess it’s all worthwhile.   Sometimes I amuse myself by imagining Bob Butler and Bill Dickinson QCing forever, as punishment for their multitude of scientific transgressions.  (That’s an in-group joke.  Don’t ask.)

What I really want to write about is secrecy, privacy, the hobbling of medical research, and the destruction of trees.   Start with trees.  Long ago, when we went to the doctor, we were greeted by a nice lady who knew our name and told us: “Sit down.  Doctor is running a bit late.”  Often the “bit” turned out to be 45 minutes, or seemed like it, but there were always magazines from the previous decade to keep us amused.  Nowadays, of course, after you identify yourself and state your business you are asked to make an immediate co-pay, then given a thick pile of forms to fill out – no time to read magazines.  The forms ask for information that you gave them just last week.  Almost invariably one of the forms concerns privacy – you are asked to confirm that they – the medical establishment you are visiting – have informed you of your rights to privacy.  I suppose that if one were to ask for such information one would be given yet another sheaf of papers to read.  I don’t know; I’ve never asked.  All I know is that an awful lot of paper is used to no obvious human benefit.  I hope it’s all recycled.

Which brings me, finally, to what I really want to talk about:  I may be wrong, but it seems to me that an excessive concern with privacy and “patients’ rights” is threatening to throttle medical research.  I was aghast to learn the following:  Patient A may contribute blood and/or tissue samples for medical research.  These samples, having perhaps been used for their initial purpose, live on in our freezers (or those of many other medical research institutes.)  Someone, sometime later, decides to study something else.  Let’s say that the original study was to determine the efficacy of CA125 measurements for early detection of ovarian cancer.  Later, it is decided to check for the presence of microRNAs in the blood, also as an early-warning signal.  Before A’s samples can be used, she must be contacted and asked for permission: even if she had originally donated the samples for something as non-specific as “medical research”.   If A has died, her family must give permission.  If her family can’t be located, tough luck.  I have it on good authority that California – that fertile breeding-ground for bad ideas – is introducing some new rules that are particularly pernicious and that  promise to make finding cures for cancers and other bad things slower, more expensive, and – conceivably – impossible.  All in the name of privacy.  Can it ever transpire that a person, having given blood or tissue for study of one medical problem, would balk at the use of those same samples for another study?  I don’t think so.  Is all this another example of CYA, in response to the pack of malpractice lawyers circling the campfire, as I suggested earlier?  Or is there really something important here that I don’t get?  Comments, please.