152 Becoming a Patient
Even in research that necessitates signed informed consent, privacy is
never fully guaranteed. Harry stated bluntly, ‘‘Confidentiality doesn’t
exist anymore. The government can look at the chart, as can the drug
company, the investigators, and the Institutional Review Board.’’
Potential limits to confidentiality could result, too, because of medical
transcribers, who type medical chart notes and information that physi-
cians dictate onto tape recorders. Surprisingly, several ill physicians vo-
lunteered this concern. Transcriptionists were invisible, but nevertheless
firmly present in the minds of those at risk for discrimination. Mathilde
said:
I had a patient whose wife was a transcriptionist here. One tran-
scriptionist transcribed my doctor’s dictation, and I panicked. So
I went to tell my doctor. Then, he specifically requested that
his dictations only be done by certain people. But more people out
there may know!
She still wondered how many others knew her husband’s diagnosis.
Especially in a small community, social and professional networks may
mingle, thus facilitating leaks. Employees in a doctor’s office may know
patients socially. Pascal’s confidentiality was breached when his dentist
hired a patient’s girlfriend.
She got a job in my dentist’s office, and found out about me. This
patient was losing his mind, and started seeing me in the hospi-
tal, saying in the hall, ‘‘My girlfriend talked to the dentist you go to.
So you have it, too?’’
Moreover, growing numbers of organizations ask about medical dis-
orders. Managed care companies, state licensing boards, hospital admin-
istrations, malpractice companies, dentists’ offices, and even scuba shops
now inquire. Ronald, the HIV-infected Connecticut radiologist, said:
The state licensing board used to ask about your incapacities. Then,
the malpractice company asked. Then, every managed care com-
pany asked. They never asked if you were HIV-positive, per se. But
it would be on a list, and it was pretty clear what they were asking
about.
Consequently, physicians had to weigh whether to tell the truth or not,
at times concealing if they felt the information was not truly pertinent.