It’s no secret that we now live in an era of information sharing, and that such sharing not infrequently includes personal medical details. To cite one example: in the wake of the Cambridge Analytica Facebook data scandal, New York Times staff editor Kathleen O’Brien wrote an article entitled “I Can’t Jump Ship From Facebook Yet” (April 14, 2018). The gist of this piece was that parents of children with various psychiatric or rare medical conditions find solace on social media. As she puts it,
For me, user-created Facebook groups for special-needs parents function like a very convenient support group you can check in with as your time-crunched life permits. People share recommendations and advice. They vent about schools, health insurance and daily life. I am not even that active in these groups, but it’s reassuring to hear from other parents, even just online.
This is emblematic of the kind of voluntary release of private medical information that occurs online. Ms. O’Brien has publicly identified her son as autistic. She continues in the article to discuss other people by name and to reveal the rare medical conditions from which their children suffer.
Additional examples of this kind of sharing abound. A casual scroll through one’s Facebook feed frequently yields a number of friends who are, ostensibly in the service of ‘reaching out’ for (or conversely, providing) the kind of support that O’Brien talks about, discussing their own mental or physical health. Everything from insomnia to anxiety to depression to MS to thyroid conditions is fair game on social media. In addition, seemingly innocuous screening tools often pop up, as well as cute quizzes that purport to give various diagnoses or risk assessments.
Add to all of this the various tracking apps – everything from fitness trackers that measure one’s steps to location services that log one’s every move – and it becomes clear that we as a society have voluntarily surrendered vast quantities of information about our physical and mental health to anyone interested in acquiring it. And not just our own information – in the case of Ms. O’Brien and others like her, information about our children.
We are accustomed to thinking of our medical records as private; in fact, there are laws governing this kind of privacy. But we fail to see that once everything is online and out of our hands, it becomes fair game for abuse.
Many people no doubt see this concern as excessively paranoid. What possible use could anyone make of my pedometer information other than to try to sell me running shoes, I might wonder.
But this complacency overlooks the extremely dark history of the way in which medical information has been used in the service of forced sterilization, torturous ‘experimentation,’ and euthanasia and extermination. The most egregious example of this is the Nazi eugenics program, a program that many Americans are unfortunately unaware of.
According to Rael D. Strous, M.D., in his article “Hitler’s Psychiatrists” (Harvard Review of Psychiatry, 2006), “Indeed, perhaps more than other medical specialties, psychiatry and psychiatrists played a pivotal role in the Nazi extermination machine—from the selection, identification, and labeling of mentally ill individuals marked for murder to the actual facilitation and supervision of their eventual murder through what came to be a highly sophisticated and efficient extermination process” (31).
It is important to note the ‘selection, identification, and labeling’ aspect of this process. In order to carry out their program of ‘racial cleansing,’ the Nazis had first to determine who among them were the ‘impure’ individuals who were compromising the ‘health’ of the German populace. They had to determine whose lives were not worth living, and they did so by means of medical records.
It is further important to point out that these cooperating medical professionals most likely did not see what they were doing as problematic. Indeed, they were committed to a cause that made perfect sense to them. Unless we learn about and fully confront the logic of their cooperation, we cannot recognize the same impulses at work in our society today.
Again, according to Strous, “Many of the scientists were acting according to what they considered to be the genuine interests of society,” and “all psychiatric institutions readily acquiesced in the request to provide lists of those who were hospitalized for over five years, criminal mentally ill, or not employable” (32).
Thus, we see two significant points here: first, that medical professionals thought what they were doing was right, and second, that they made use of medical records to make their determinations.
It might therefore be prudent to ask ourselves whether it is really harmless to have surrendered data about our mental and physical health to forces we cannot identify. The Cambridge Analytics breach permitted the political campaign of Donald Trump to obtain this kind of information. That means that the current government can, if it so desires, compile lists of U.S. citizens with various self-identified medical conditions. Presumably, our government might know what medications we take, what our blood pressure readings and cholesterol levels are, and what kind of risk for dementia we have. And that is just one stakeholder that we are aware of – all kinds of other entities may have this data by now.
What prevents them – or anyone – from deciding that, for the good of the society, we cannot use limited resources to maintain the lives of people whom they determine to be non-productive or potentially harmful? It is now too late to erase the digital footprints we have left all over the internet; it might behoove us to start thinking about both our future behavior and ways to protect ourselves from potential abuses.
Beyond that, though, we must be wary. We must be on our guard for any signs that our nation is going down the path that the German people so blithely traversed in the 1930s. Are there signs that this is happening? What might they look like?
I would suggest that there are three. First, there must be a nationalistic movement that seeks to return to an imaginary Golden Age and that defines the ‘true’ members of the nation in specific ways that marginalize vulnerable populations. Second, there must be a sense that economic resources are limited and cannot be ‘wasted’ on unproductive members of society. And third, there must be ways of identifying and categorizing ‘undesirable’ persons such that they can be targeted for discrimination.
I have suggested here that the third point is already very much in play, and that we have identified and categorized ourselves voluntarily, making it extremely easy for unscrupulous parties to sort us for their own ends. This is already happening. I believe that sufficient evidence for the first two conditions exists as well, but that is beyond the scope of what I address today.
At the very least, we must, as I’ve suggested, be cautious about sharing our personal medical information and be on our guards as to ways that it could be abused. And in order to convince the younger members of our society of this potential danger, it is absolutely essential that we teach them about the eugenics movement and its role in setting the stage for the Holocaust. We ignore this history at our peril.
Nancy Rehm spent 31 years teaching in the Pennsylvania public school system. She has taught everything from first grade through college. The last 22 years of her career were spent at the high school level, where she created and ran a unique integrated humanities program for gifted students focused on connections among various disciplines, including literature, philosophy, history, science, and the arts. She has certificates in both secondary English and K-12 Special Education, and holds a Masters Degree in Special Ed. An artist and a writer as well, she now lives in Dallas, PA.