Sometimes the articles I write come straight from gut instinct. This isn’t one of those posts.
Confirmation bias is a difficult problem, because it’s easy to interpret those gut feelings as truth and get wrapped up inside some fear that’s actually fiction. I wrote about the issue in Wishful Thinking earlier this year.
It’s not a Dots post either, because it’s not specifically about our political leaders. It’s about something much, much more insidious. While it relates to the political climate, it’s not about the White House, or Congress, or the judicial system…at least, not as they exist at this present moment.
It’s about the past, and the future, and where we are today. It’s about science, history, and a latent fear of a possible dystopian future if we don’t work out a way to correct our trajectory.
I’ve said it before: I’m a pattern matcher. I went back to college and took a European history course precisely so I’d have better tools to draw the parallels I was seeing back in 2012. Thanks to a lot of self-exploration, I’m seeing a connection to an ugly part of the past, but being stuck smack in the middle of the forest, it’s kind of hard to look at the big picture and notice how many of the trees look alike.
I don’t know if we’d even be here if some key points in recent history hadn’t put us where we are: Gore’s failure to fight the 2000 election crap in Florida, 9/11 and the USA Patriot Act, Scalia’s Voting Rights Act decision, interference in the 2016 election…these things all look like separate instances, but they add up, layer on layer, until we have today’s reality.
But that’s not where we are. It’s not who’s in charge. Depending on the outcome of this year’s Midterm Elections, it could easily be a dystopian nightmare straight out of Gattaca or Brave New World. It could shape our future for the next century.
The following might not immediately appear related, but bear with me. I’m building a case, and you need to have all the parts.
Autism Spectrum Disorder (ASD) and Asperger Syndrome (Asperger’s)
Where to start? Let’s go a couple of years back in time, before Trump “won” the election, to spring, 2016.
While we were deep into the primary season for the election that got us Trump, my kid finally received a diagnosis of High Functioning Autism (HFA), courtesy of high school psychologists who finally reexamined evidence and worked up a profile that explained why things were what they were.
People used to refer to HFA as Asperger Syndrome, before that diagnosis was lumped in with other parts of the autism spectrum disorder (ASD) in 2013 in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
My kid’s diagnosis led me to further exploration into the condition, and ultimately self-diagnosis (which apparently happens a lot for women), because we’re only just starting to understand the differences in how girls and boys are raised and the impact of socialization on how we present. I could share some intimate details of my childhood which would lead you to nod and agree, but just trust me on this. It’s not my imagination.
Part of that exploration led me to read the book NeuroTribes, on the recommendation of a friend who assisted with research into part of the book. Because I have a long commute, I opted for the audiobook version, and it took a long time to listen, because it’s quite dense.
In the book, there’s a section that’s not for the faint of heart, describing in sometimes excruciating detail Hans Asperger’s connection to the Nazi science behind his parallel identification of children who seem “neurotypical” but have traits that set them apart. He called these children little professors because of their advanced vocabulary and special interests. (If you’d asked me about horses when I was a preteen, I could have told you anything you wanted to know. Anything. But I digress.)
Asperger’s work, independent of Leo Kanner’s, led medical professionals to believe that ASD and Asperger’s were separate conditions, not related. The research was almost exclusively based on boys, not girls, because ASD presented more obviously in boys and was almost exclusively considered a male condition as a result.
NeuroTribes was published in 2015, at just the right time to make available a series of answers, to provide reasons for why my kid acted the way she did. I read Aspergirls on a recommendation from a different friend who had reasons to suggest the book specifically for me and my kid.
And we could just have left it at that: Enlightenment, understanding, a better way to treat and relate to my kid.
But then Trump got elected.
Genetic Testing
In 2007, according to a Wikipedia article on the company’s history, 23andMe became the first company to provide autosomal DNA testing for ancestry. Their business model eventually planned for medical testing as well as ancestry, to provide research on inherited disorders.
In 2013, Scientific American published the following:
23andMe Is Terrifying, but Not for the Reasons the FDA Thinks
What does 23andMe want to do with all that data? Right now the talk is all about medical research—and, in fact, the company is doing some interesting work. It has been sifting through its genomic database, which is combined with information that volunteers submit about themselves, to find possible genetic links to people’s traits. (The bright-light/sneeze genetic tag is a 23andMe discovery.) More promising are 23andMe’s attempts to recruit people who suffer from certain diseases, such as Parkinson’s and a few types of cancer. Simply through brute-force pattern matching, the company has a chance of finding genetic causes of these ailments, which could lead to a way to combat them. (And perhaps a blockbuster patent or three.)
That’s just the beginning, though. 23andMe reserves the right to use your personal information—including your genome—to inform you about events and to try to sell you products and services. There is a much more lucrative market waiting in the wings, too. One could easily imagine how insurance companies and pharmaceutical firms might be interested in getting their hands on your genetic information, the better to sell you products (or deny them to you). According to 23andMe’s privacy policy, that wouldn’t be an acceptable use of the database. Although 23andMe admits that it will share aggregate information about users genomes to third parties, it adamantly insists that it will not sell your personal genetic information without your explicit consent.
In fact, just a month ago, this happened. The details are murky in the NY Times article but are clearer here (from Wikipedia’s entry on 23andMe):
In March 2018 the FDA approved another de novo application from the company, this one for a DTC test for three specific BRCA mutations that are the most common BRCA mutations in people of Ashkenazi descent [emphasis mine]; they are not the most common BRCA mutations in the general population and the test is only for three of the approximately 1,000 known mutations. These mutations increase the risk of breast and ovarian cancer in women, and the risk of breast and prostate cancer in men.[56]
Going to come back to this in a bit. Hold that thought.
Recently, a friend posted a link (that Facebook then hid), which was entirely cogent:
Framed for Murder By His Own DNA
We leave traces of our genetic material everywhere, even on things we’ve never touched. That got Lukis Anderson charged with a brutal crime he didn’t commit.
Imagine what it might be like to pick up some random DNA, at the laundromat, on the Metro train, or by handling a book at the library. You get the idea. Suppose your DNA commingles with that of a murderer and that DNA is then found on something at the scene of a crime. This isn’t fantasy. It happened. At least once.
There are also family secrets that remain hidden as long as people don’t go looking too carefully for the truth. These tests destroy those façades. If a family faces infertility, for example, and resorts to using a sperm bank, never hinting at the truth, that lie can upend itself as soon as the test results come back.
Then, on April 26th, Reuters reported that police finally had a man they believed was the Golden State Killer. It was all over the news and on social media for the better part of a couple of days, making it huge news. I caught the initial report in passing on Morning Edition as I was waking up, but something stuck in memory and I had to research it later in the day.
It was their method of identification that caught my attention. I’m really glad they caught the alleged perpetrator, but I find the method they used to be profoundly disturbing. My response was gut driven, and that was before I did the research for this post.
In an overtly fascist regime, using DNA to tie you to a crime is all well and good if the proof exists and you can guarantee it hasn’t been tampered with in any way, but just put your imagination cap on and think for a moment what this looks like when the evidence is mislabeled and it turns out that your DNA is identified on crime scene evidence because you happened to be in the wrong place at the wrong time, or because someone just wanted to be sure you were taken care of. It’s the stuff of horror novels.
Too much speculative fiction? Too many true crime dramas? One too many spy novels?
You think that stuff gets invented out of whole cloth?
I can guarantee you right now, I’m not willingly or knowingly submitting my genetic data to any of these sites.
No way, no how.
A doctor friend subsequently pointed out the following to me, which dovetails with my concerns but doesn’t address them completely:
[Joseph James DeAngelo] didn’t submit his DNA; [investigators] found him as a familial match. This is analogous to having your FB profile info lifted from a Friend’s profile except that you can’t put security measures on your DNA like you can with your profile!
Now combine those two crime scene stories, and you get closer to what worries me, but you’re still not quite there. I’ve had arguments with friends about the privacy issues surrounding these “harmless” genetic tests. It’s not just entertainment value.
Goals
23andMe has a database which—Honest! They swear!—will not be used for any nefarious purpose, except when forced. But, see, they can’t divulge anything I don’t give them. And there is zero chance I would participate willingly in such data collection. Further, I’d actively discourage my family from participating. I know where my family comes from. There could be a few surprises, but nothing will drive me to confirm them either way.
I know which villages in Belarus and Ukraine, which village in Poland, reasonably sure which city in Austria, and exactly where in London, my family derives, thanks to existing genealogical research. And that’s as close as I intend to get. I don’t need to give an online source that data, especially when 23andMe’s Terms of Service say this:
Genetic Information you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future. While the Genetic Information Nondiscrimination Act was signed into law in the United States in 2008, its protection against discrimination by employers and health insurance companies for employment and coverage issues has not been clearly established. In addition, GINA does not cover life, long-term care, or disability insurance providers. Some, but not all, states and other jurisdictions have laws that protect individuals with regard to their Genetic Information. You may want to consult a lawyer to understand the extent of legal protection of your Genetic Information before you share it with anybody.
Furthermore, Genetic Information that you choose to share with your physician or other health care provider may become part of your medical record and through that route be accessible to other health care providers and/or insurance companies in the future. Genetic Information that you share with family, friends or employers may be used against your interests. Even if you share Genetic Information that has no or limited meaning today, that information could have greater meaning in the future as new discoveries are made. If you are asked by an insurance company whether you have learned Genetic Information about health conditions and you do not disclose this to them, this may be considered to be fraud.
And, finally, we’re back to Hans Asperger again. Here’s why I have zero interest in divulging this information:
Asperger’s Syndrome, the Nazi Regime and the Dangerous Power of Labeling People
Discovering these stories, it was difficult to reconcile Asperger’s role in the killing program with his reputed support for children he deemed promising. Both were in the documentary record. The double-sided character of Asperger’s actions led me to realize the double-sided nature of Nazism as a whole. The Reich’s project to transform humanity involved both treatment and elimination.
Some individuals could be remediated to meet Nazi standards, and some needed to be eradicated. Whereas Jews were to be eliminated as a race, for example, certain people with Slavic heritage might be Germanized, or the “asocial” might be taught to work. Similarly, for Asperger, those on the “favorable” side of his autistic “range” could be taught “social integration” and even be recognized for “special abilities.” They were to be given first-rate care. Meanwhile, children like 3-year-old Ulrike Mayerhofer, whom Asperger described as “severely autistic,” were to be killed at Spiegelgrund.
It came down to one’s label. The Third Reich was a diagnosis regime, obsessed with sorting the population into categories, cataloging people by race, religion, politics, sexuality, criminality and purported biological, mental and behavioral defects. Nazi officials created massive population indexes that compiled individuals’ medical, financial, educational, criminal and welfare records — even sports club files. By 1942, Reich Health Leader Leonardo Conti estimated that ten million Reich citizens had been indexed — 12% of the total population. These files, then, established the grounds for sterilization, deportation and extermination.
People are worried about the government getting their guns. They’re worried about a National Health System. They’re focused on the wrong things entirely.
If you feel the need to understand where your family derived, great. Enjoy. Concerned about the family trait for Alzheimer’s or breast cancer? Understandable.
Me? I listen to all the dogwhistles and watch Nazis burn swastikas in Georgia, and for me that’s a big, fat “Hell No!”
Your mileage may vary.