23 And You … Not Me
Several years ago, I was sharing some beers with a friend while we were enjoying another glorious Saturday of college football, and somehow or other during the commercials, we got to talking about the 23andMe phenomenon (in fairness, it must have been during halftime or between games, because there is no way I would have sullied important on-screen battle with anything as silly as faddish suburban genetics). Our friend is actually an internationally renowned geneticist, as well as a really nice guy, and was waxing enthusiastically on the ability of everyday people to mail off some dried spit to learn which continents their ancestors once trod. I registered decisive disdain for any personal participation, and as any true scientist (not the Fauci kind) would, my friend was dismayed.
“But why wouldn’t you?” he asked, “You would be contributing to the greater body of knowledge and research.”
“I don’t care,” I answered. I didn’t care, and still don’t because I’m only mildly interested, but not so much that I wish any of my genetic information to be unnecessarily shared with anyone. “A c’mon Conrad, you paranoid pot-stirrer,” I can hear some of you say now, eyes rolling, “You’re always coming on here warning about government, or Big Tech/Pharma/Insurance/Hospital trying to target us. Give it a rest, this is just science.” Our friend’s initial instinct was such because he is a genuine scientist, which means he is an honest person, not naïve by any stretch, but he simply didn’t think it through.
“It has been reported that a few million data points from the 23andMe user accounts have been revealed on Breach Forums, a cybercrime marketplace, leaking a trove of user information which was stolen from the company’s subset of data.” Well of course it was.
“Hackers posted the data on Breach Forums, claiming that it contains 1 million genetic data points ‘solely from Ashkenazi Jews.’ There were also hundreds of thousands of users of Chinese nationality who were affected by the leak.”
The actual genetic data are not merely isolated points, but are connected to individual names and birthdates, which means that any 10-year-old with a smart phone could quickly locate someone and already know something intimate about him. And if that pain-in-the-ass kid could find someone with a genetic, um, “variation,” how much more could Big Tech/Pharma/Insurance/Hospital, or of course, the government learn about an individual? Suppose Big Insurance got the DNA heads-up on a woman descended from multiple family members with breast cancer? How easy would it be alter the actuarial forecast and jack up the premiums for an unlucky lady hopeful to start a family, but has a (recessive) cystic fibrosis gene? What if a physician applying for privileges at a corporate hospital is known by that corporation to have a cautionary A1 allele of the DRD2 gene? Can that physician safely attend a cocktail party where he might be spotted by the CEO?
And what if someone’s genetics demonstrate a strong correlation with longevity? Wouldn’t the bean counters at CMS love to find a rationale for another angle on the inevitable means testing that will be necessary to keep afloat the godawful false promises of Medicare? At age 30, you are likely to live to 98.3 years, which means we’ll spend more on you over longer years, so your premiums will need to go up substantially.
And how could doctors be punished for this crap? You KNEW your patient had the gene for (_______) and you FAILED to start him/her/they on (_______). The contemptible malpractice lawyers must already be tying on their lobster bibs. And the equally awful Big Insurance knives will gin up a whole new list of codes, covered/not covered, and genetic documentation requirements. In 1985, hijackers of TWA Flight 847 collected passports to sort out a certain ethnicity. How much more could a nation that has a totalitarian grip over more than a billion people try to “sort out” undesirables via genetic info? How much more would a nation that attempted to force unnecessary vaccines try to get away with when armed with the proper individual data … collected by the same physicians who were bullied into enforcing the abuses we saw over the past three years?
To your point of not wanting to contribute your genetic information to “23 and Me”.
“Inquiries into Human Faculty and its Development” by Francis Galton (1883).
“The investigation of human eugenics – that is, of the conditions under which men of a high type are produced – is it present extremely hampered by the want to full family histories, both medical and General, extending over three or four generations. There is no such difficulty in investigating animal eugenics, because the generations of horses, cattle, dogs, etc., are brief, and the reader of any such stock lives long enough to require a large amount of experience from his own personal observation………. Believing, as I do, that human eugenics will become recognized before long as a study of the highest practical importance, it seems to me that no time ought to be lost in encouraging and directing a habit of compiling personal and family histories. If the necessary material be brought into existence, it will require no more than zeal and persuasiveness on the part of the future investigator to collect as large a store them as may require.”
The idea crossed the ocean into the USA by the first decade of the 20th century.
By the 1920’s, Galton’s “persuasiveness” came at the point of a gun with forced steriliazations.
……..And on to the people who brought us Adolf Hitler!! Only thing I thought was a benefit was the long standing test that could show one is going to die of Huntington’s disease. Had two young patients with family histories of it and I did the test at their requests and unfortunately they had it. Told them to speed up their “bucket lists” and they left my Central Illinois area to do just that. I’m in some ways glad I didn’t have to take care of them in their terminal phases.
It was a long time ago and they were in their early 20’s. I did “inherit” a few patients when I came into my practice early on who had Huntington’s and it’s a very sad disease. Not much one could do back in the 80’s. I’m glad I had no one who came down with it thereafter but “Alzheimer’s” is just about as bad but most sufferers have gone through a full life and get it later in age.
Though I had a tough situation when a patient came down with Alzheimer’s in their early 40’s!! Referred to neuro to document it and I had to take care of him and his loving wife (who didn’t have the disease) until he died in his late 60’s. Such a sad thing.
Darwin “Origin of Species” published 1859.
Gregor Mendel “Experiments on Plant Hybridization” published 1865.
Francis Galton coined the term “Eugenics” in 1883
I’ll leave it to you to calculate how long it takes for real science to become corrupted.
Francis Galton was Charles Darwin’s half-cousin. He was a highly intelligent man…….in mathematics and statistics. A polymath. He studied at King’s College Medical School, but did not finish, and went on to Trinity College Cambridge for mathematics.
His family included many members of the Royal Society and his birth home formerly belonged to Joseph Priestley.
He wrote a book “Hereditary Genius” in 1869. Lots of polymaths in his family, and he felt this to be genetic.
I give you the movie, Gattaca. Well worth watching and do ask how the government got all that DNA info?
CMS surveillance of EHRs “…without patient authorization.” That’s in the Federal Register.
Just because you’re paranoid doesn’t mean they’re not out to get you.