One of the most contentious and anxiety inducing topics to come out of the COVID-19 crisis is the infected patient’s right to privacy as opposed to the community’s right to know. Since the median age in the United States is 38.3 years (born in 1982), few are left who remember quarantine signs posted on the doors of those with diphtheria, polio, scarlet fever or smallpox, and many of those folks have now died from the virus. To explain how we arrived at this right to privacy would take more space than I have, but all I can say is that after reading some forgotten history, I’m conflicted.
My opinion about privacy issues and communicable diseases was formed during the AIDS crisis while in human resources at a Houston psychiatric and substance abuse facility. If you were in health care or law enforcement then, you understand what I mean when I say the infected weren’t above using their bodies as weapons, intentionally scratching, biting and spitting in a deliberate attempt to infect or create the fear of infection.
My friend, co-worker, experienced lab technician, wife, and mother, saw her life shattered when a possible HIV positive drug addict intentionally created a situation exposing her to his blood after she removed her gloves. She began a controversial drug regimen with negative side effects, but those paled in comparison to the effects on her home life. The stress of possible infection became so great, she and her husband eventually divorced which lead to a custody battle for their two young sons.
From my perspective, the pendulum had not just swung too far in one direction but had been hogtied by special interest groups and attorneys. Yes, the facility had taken precautions but how could the rights of HIV infected drug addicts trump those of the health care workers taking care of them? Their drug addiction was known to the caregivers, but the deadly HIV aspect was private. During this current crisis, I’ve often wondered what my friend’s sons, the collateral damage if you will, in their mid to late 30s think about patient privacy now.
But there is always more to the story. While it seems unthinkable now, in the first half of the 20th century (that’s 1900-1950) doctors often made the decision alone whether or not to disclose a diagnosis to a patient. It was very paternalistic.
Public health registries were created in the late 1800s to track tuberculosis, but reporting was selective. According to Viewpoint, Public Health Reports, 2007, “Middle class and wealthy patients were protected from health department supervision by the physicians.” Later, during the polio outbreak, the agencies published daily lists with names and addresses in the local newspaper.
As registries for birth defects, vaccination tracking, cancer, diabetes, etc., increased over time, so did concerns about sharing information, particularly between public health agencies and non-public health agencies. Apprehension arose about a disease’s stigma, prejudice, loss of prestige or self-esteem and even job loss, and it came to a head during the AIDS epidemic. Enter HIPAA and pages and pages of consent and release forms for that colonoscopy.
From my perspective, Americans today are less concerned with preserving their privacy than their health care providers whose lawyers must protect them from someone else’s lawyers. Ask anyone over the age of 55 how they feel, and you’ll hear more than you want about “private” health matters. Facebook is flush with blogs, posts and Go-Fund Me requests containing “private” health information. Not judging, they’re often educational and therapeutic, just pointing out the irony. In this COVID-19 era,
In this COVID-19 era, the brunt of our collective anger falls on those closest to us and whose hands are tied by law. But when it comes to communicable diseases, the lawyers and public health agencies, i.e., the government, might be prudent to review the law in light of prevailing social norms. Connie Clements is a
Connie Clements is a freelance reporter for the Navasota Examiner and award-winning columnist. She writes feature news articles on a weekly basis and an opinion column as the mood strikes her.