[ExI] good bexarotene article

spike spike66 at att.net
Sat Feb 11 23:46:27 UTC 2012

>... On Behalf Of Stefano Vaj
Subject: Re: [ExI] good bexarotene article

2012/2/11 spike <spike66 at att.net>
>>...There should be a database somewhere, where people can dump medical
information, while stripping out identities, so that we can find this kind
of signal in the noise.  I am surprised something like that doesn’t exist
somewhere.  We could maintain patient privacy while still perhaps filtering
out these oddball correlations...

>...Yes, this would be a very good idea. Not that I understand why privacy
should really be a primary concern for terminal cancer patients...  --
Stefano Vaj

I can think of reasons with regard to health insurance and life insurance.
I can imagine cases where a person who thinks they have cancer might try to
go anonymously to a medic and get it diagnosed, then figure out some way to
not have their health insurance cancelled.  Or in the coming age in the US
where we may be required to buy insurance, that information may be
intentionally hidden.

In any case, the medical records infrastructure as it exists in the US is
all about patient privacy, with no regard to filtering out unexpected
correlations between a medication and some unrelated disease.  We actually
risk patients' lives in some cases in order to maintain medical record
privacy.  The only area where we don't really sacrifice safety for privacy
is when a prole's eye doctor finds her vision insufficient for guiding her
Detroit.  In that case, they are certain to alert the authorities.  But if a
person is found crazy as a loon for instance, that information will
generally not prevent the prole from purchasing firearms for instance.  If a
person is found to have HIV, we have no systematic way of warning the public
to not screw with the patient.

Stefano, regarding your comment about primary concerns of cancer patients, I
can imagine we have PLENTY of patients willing and eager to tell all there
is to know, but we have no infrastructure in place to accommodate
information volunteers.  I can easily imagine 10 to 20 percent of all
patients volunteering their medical histories.  I am one.  It might skew the
results toward those of us who have had delightfully boring G rated lives.
Or maybe just the opposite, I don't know.  People who are healthy don't give
this question a second thought, because they don't go to see the medics.
This would also distort the record toward the chronic medic-seers.


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