The Coming War over Genetic Data and Privacy

One of the most difficult things I’ve found in life is trying to maintain a calm and open mind in the face of something about which I’m deeply passionate. I suspect I’m not alone in this; we hold certain beliefs very close to the heart, and anyone who threatens those beliefs poses an almost existential threat to our social selves.

For reasons I’ll not go into now, eugenics and the privacy of personal genetic information are things about which I am largely decided and unyielding. I have personally seen the evil of people who use genetic information against both individuals and groups–most commonly races and genders –but it doesn’t matter what the target is on any given day. The true, eternal target is anyone who is not compliant with those in power and who can thereby be defined by selective genetic analysis as undeserving, unworthy and subhuman.

It should not surprises anyone therefore that, in my opinion, the abuse of personal and genetic information is among the greatest threat to individual liberty in our increasingly corporate fascist state (whether you realize you live in one or not). You cannot be free if you cannot be employed because your genetic history shows that you have an above average tendency toward heart disease or independent thinking. You cannot be free if you cannot get insurance because of a genetic marker for a rare disease or, worse, a common one. In fact, you cannot enjoy any of the liberties guaranteed in the Constitution when any corporation, organization or government entity can use your genes against you.

Because then it then no longer matters how hard you work, how innovative, driven or creative you are. You are by one genetic test reduced to a statistic and nothing more. There is almost no easier way to be stripped of your humanity than to be marked as flawed by your genetics. This is the true power of eugenics across geography and time, whether used by eugenicists, fascists, Nazis or your local employer; misused genetics cloaks racism and hate in the legitimacy of science and plausible rationality.

I’m not being a bigot! Not me, never. This report here says you’re 0.1% more likely to have a nervous breakdown on the job, and I just can’t afford to take this risk. You can understand that, can’t you? Well, maybe you can’t. It says here you’re 15% more likely to act based on passion than reason, so maybe that’s why you’re crying. It’s not your fault. You’re just genetically weak. 

If you think this is an exaggeration, then I’m sorry, but you really need to pull your head out of your butt. Think for just one second about credit ratings. Think how easy it is for negative information is to make it into this report and how nearly impossible it is to get it removed. Think how damaging that nominally innocent mistake is to your ability get a job, buy a house, pay for car insurance and so on. Now imagine that you’re flagged as having a 14% higher chance of having a heart attack on the job, true or not. Try to get that off your record before you’re fired and your insurance drops you.

Now ask yourself why that’s even something that we should be discussing. It’s insane. What right does anyone have to your personal medical or genetic information? Well, that largely depends on you and the world you wish to live in.

In one possible world you have legally enforced genetic privacy and all of this is moot. Your personal information cannot be used against you at the individual level, and it cannot be aggregated to use against you at the group level. Certain insurance companies my not run as efficiently as theoretically possible, and some social and workplace issues may remain untenable, but you will remain free (from this particular threat). This world is largely an illusion because we are doing nothing to hold onto it; every day, it becomes more fantasy than reality, and soon it will be gone. And you probably won’t even notice until it’s too late.

In a far more likely world, you have no genetic privacy and your future is largely determined by your genetic report card. You may work hard, but you can never really overcome a genetic rating lower than 550. And you’ll never really appreciate the privilege that come with your 800 rating. The only escape from this trap will be for the rich who can essentially redesign their genetic architecture using CRISPR or other emerging genetic technologies. The poor will become synonymous with genetic inferiority and the rich with genetic godliness which, let’s be honest, is what many of them already think of themselves.

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Are you genetically superior to Ethan Hawke? Then maybe you can work at Gattaca.

This is not a new or creative thought. It is exactly the future predicted a thousand times in dystopian fiction like Brave New World and  Gattaca, and it is the future we are realizing today. It is the world we are choosing as we allow genetic information and reporting to be used for any reason other than personal decision making. This is the world you are choosing by not informing yourself of what is happening, right now, in your own county.

Take HR 1313, a bill sponsored by GOP Representative Virginia Foxx that is currently under consideration by the US Congress. It has passed from committee with the nominal good intention of “Preserving Employee Wellness Programs.” You can read more about it on Fortune:

“The wellness programs typically include basic biometric screenings, access to gym memberships, and health care-related questionnaires. But two older, milestone laws don’t allow these wellness programs to include genetic testing: the Americans with Disabilities Act (ADA) and the 2008 Genetic Information Nondiscrimination Act (GINA). These laws bar employers from even asking workers to undergo a genetic test.”

HR 1313 would remove these impediments, allowing employers access to employee genetic information as a requirement for participating in wellness programs which, themselves, are driven by financial incentives. And once employers have this nominally anonymous information, nothing in HR 1313 prevents them from using it for any other reason whatsoever.

Exciting stuff, right? What could be more jazzy than employee wellness legislation?

But that’s exactly the point. In the nominally innocuous process of grinding the sausage of insurance legislation, Congress is opening the door to genetic screening and the inevitable discrimination that follows. You can scream all you want about whatever hot button topic freaked you out on Facebook last night, but you really should be praying that you have an absolutely perfect genetic code that no one can ever find fault in. No flaws. Just yummy genetic perfection.

I’m not kidding. Get down on your knees and pray that you are Hitler’s wet dream, or wake the hell up. Those are really your only options, because this is how corporate fascism works. A boring, almost invisible collusion between the government and corporate lobbyists slowly chips away at the laws that protect you until you get fired for a genetic mutation you inherited from your grandfather. Think you’re safe?

“Each of us is thought to carry dozens of glitches in our DNA. Single gene disorders alone are estimated to occur in 1 out of every 200 births. Complex genetic disorders such as heart disease, high blood pressure, Alzheimer’s disease, cancer, and diabetes represent the majority of the 15,500 recognized genetic disorders afflicting 13 million Americans. Given the prevalence of genetic mutations, any one of us could have a predisposition for a genetic disorder.” (Harvard, 2008)

This should be obvious, but it’s probably not. Just because you feel healthy, or are healthy your entire life, doesn’t meant that your genetic report card would be a good one. Sometimes we just get lucky. Sometimes multiple genes and other factors interact in ways that no one can predict or even understand. And none of that changes the fact that employers, insurance companies and others can make decisions that impact your life using this information even if they have absolutely no damn idea what it really means. Think about your boss. Now imagine that genius interpreting the genetic test you were forced to take so that he can decide whether you get a raise or a pink slip. Feel better?

Well, maybe you do. You’re awesome, right? Now think about all the hacking and exposure of personal and corporate information you’ve heard about lately. Imagine that the data leaked was instead your genetic tests and ratings and now everyone knows you are 88%  likely to have a very, very small penis and a stroke before age forty. Now go get insurance, a job, or a date. Not worried yet?

Then you’re an idiot. I’m sorry, but if you think this is not going to happen or you’re immune to it, you’re wrong. Genetic testing and the use or misuse of that information will be one of the major determining factors in the course of our society over the next generation and beyond. It will determine which embryo is picked during fertility treatments, which fetuses are aborted, which children go to which school, which applicants get the good jobs and who gets  to marry the genetic hotties. It will determine who is poor and who is rich as much as almost any other advance in technology.

Here are some of the “documented” cases of genetic discrimination tracked by the Council for Responsible Genetics:

“Lisa’s young son has been having difficulty in school. Suspecting a learning disability, she consults her doctor. Her doctor performs some genetic tests, and tells her that Jonathan has Fragile X Syndrome, an inherited form of mental retardation. Her insurance company eliminates Jonathan’s health coverage, claiming that his disability represents a pre-existing condition. Lisa searches unsuccessfully for another company that will be willing to insure her son. She ultimately quits her job so that she can qualify for Medicaid.

“Kim is a social worker with a large human services agency. During a staff workshop on caring for people with chronic illnesses, Kim mentions that she was the primary caretaker for her mother who died of Huntington’s disease. Kim herself has a 50% chance of developing this fatal genetic condition. One week after she reveals her risk status, Kim is fired from her job — even though she has received outstanding performance reviews in the months prior to the firing.

“Mary has a family history of breast cancer: both her mother and her aunt have been diagnosed with it. She worries about her future and is considering getting tested for BRCA-1, a gene associated with some forms of hereditary breast cancer. Ultimately, she decides not to take advantage of the test, because she fears a positive result will jeopardize her chances for promotion at her law firm.”

You think the legacy of slavery and Jim Crow have lead to structural discrimination or that women face a glass ceiling with promotions and wages? You ain’t seen nothin’ yet.

The obvious answer to this article’s title question is, no, you are not genetic perfection and neither am I, because perfection is always defined by someone with an agenda. The pursuit is never for perfection itself, which even (most) lunatics know is impossible to either define or obtain, but instead for justification for discrimination and, eventually, literal or socioeconomic extermination.

So, yeah, write your Representative and tell them that you oppose HR 1313. But then get ready for war. Because this isn’t going away any time soon.

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