"What I may see or hear in the course of the treatment or even outside of the
treatment in regard to the life of men, which on no account one must spread
abroad, I will keep to myself, holding such things shameful to be spoken about."
This quote from the
Hippocratic Oath, which is traced back to ancient Greek
medicine, shows that medical privacy is not a new idea. Physicians were
expected to keep secrets, but there was little public concern because, as
discussed earlier, medical care was much simpler so there was less information
to worry about and few people handling it so there was little chance of the
patient's privacy being breached. As discussed above, after World War II,
medical care changed from simple care given by physicians to hospital-based
team care. This change made medical care less personal and much more
threatening. At the same time, the civil rights movement caught up to
medicine.
In the 1960s and 1970s, patients started demanding a say in their medical
care. Physicians were pressured to end the practice of hiding cancer and other
fatal illnesses for patients. While this was a common practice, there was
overwhelming evidence that patients wanted to be told about their illnesses
and did better when they were told. Lying to patients about their condition
also meant telling family members and sometimes others about the patient's
medical condition, while withholding this information from the patient. This
created tension between family members and the patient because the family
members believed that had to follow the physician's advice and lie to the
patient. Patients started demanding access to their medical records so they
would know what was being done to them and why. The main concern was
controlling care. Access to information and its control were important as they
related to the care.
While there were many factors that lead to today's concerns with medical
privacy, the single most important factors was acquired immunosuppression
syndrome (AIDS) and its, cause human immunodeficiency virus (HIV) infection.
In 1981, the first cases of AIDS were identified. It was suspected to be an
infectious disease before its method of transmission was worked out. This lead
to public fear of being in contact with persons with AIDS, a fear that was mixed
with discrimination because AIDS started as a disease of gay men and drug
addicts. There were many anecdotes about gay men being fired from their jobs
or losing their apartments because they had AIDS or were feared to have
AIDS. AIDS support organizations and civil liberties groups such as the ACLU
starting looking harder at medical privacy and publicizing the potential
consequences of having employers, landlords, and others learn about
frightening medical conditions such as AIDS and cancer. It was also not
unusual for persons with other serious or disabling illnesses to lose their jobs
because their employers were afraid of increased health insurance costs and
lower productivity.
AIDS advocacy groups pushed the issue of medical privacy beyond concerns
with the unauthorized release of private medical information. The issue
because preventing the discovery of a patient's HIV status, and, if the patient
knew he was HIV positive, keeping the information out the patient's medical
records and even keeping the information from the patient's physician. As
discussed in the section on
Public Health, this had a profound effect on public
health practice and research. Medical privacy soon became a general patient's
rights issue and not just a concern for persons with AIDS. The fear was
discrimination in the workplace and the loss of health insurance. Workplace
discrimination was a real problem related to medical privacy and lead to the
passage of the Americans with Disabilities Act, which is discussed later in this
section. Although fears about having losing one's medical insurance were used
to drive medical privacy laws, insurability is not really a privacy issue.
People with individual, as opposed to group, medical insurance policies often
lose their insurance if they develop a chronic disease. People with chronic
diseases who are uninsured, or whose employers quit offering group medical
insurance, have a lot of trouble finding coverage, and when they do it is very
expensive. Until fairly recently, persons with chronic illness who were covered
by group insurance could have coverage for their illness excluded from
coverage if they changed employers. Many people saw this as a privacy
problem that could be solved if they just had stronger privacy laws to protect
medical information.