Why I've Decided to Avoid US Genetic Testing

Two things have been universally true the more we learn about the human genome:

1.) It's startling just how much is determined by genetics

2.) It's startling just how little is determined by genetics

How is it that both are true? We are constantly learning that genetics is a strong determining factor in a number of seemingly complex traits, everything from the way you comb your hair to your food preferences and more. A recent study found a single genetic locus in mice can entirely alter the manner in which they build tunnels!

But these are all seemingly complex behaviors. We are often surprised by the genetic control over such things because we can analyze these behaviors and break them down into discrete steps. To think that all of these steps, in combination, are controlled by DNA is frankly quite disturbing. It makes you wonder just how much can be determined by genetics. It might even make you question who you give access to your, or your offspring's, genetic information.

You know what is an even stronger determining factor of overall life quality, though? The Marshmallow Test (http://en.wikipedia.org/wiki/Stanford_marshmallow_experiment).

As humans, our key defining characteristic is our ability for higher cognition. While it is true that genetics provides the pallet from which your brain paints its cognitive abilities, the reality is that your children's brains will continue growing, developing, and changing for years to come. As the parent of identical twins, I expect you will get the chance to experience first hand just how much environmental factors can cause cognitive development to diverge, given the same starting genetic material.

So, yes, if the NSA got a hold of your genetic information, they might be able to determine that they should serve you steak, and not a salad, at dinner when they are attempting to recruit you to become a double agent, but they certainly won't be able to predict how loyal, hard working, diligent, or resourceful you would be in the position.

Hi all, OP here. You busted my box.

It seems to be working again now, but I've reposted the article on my Neocities page in case there's another tidal wave of visits.

http://bencollier.neocities.org/

Is a UK company less likely to give your data away? I thought the UK government was also in on the spying. Really, is there any company or government that you can genuinely trust not to spy on you, or to hand over your data?

This is the struggle of the internet all over again.

We'll need to have personal genome sequencers, and control and protect the flow of our genetic information, just like we need to control the flow of our speech and sites visited.

Right now a company owns the rights to the genome marker which is responsible for breast cancer.

http://www.techdirt.com/articles/20130713/01171423788/myriad...

This means nobody can check their genome for potential breast cancer without paying this company a tax. Again, this is only data.

We will have genome marker piracy soon enough, where people will be exchanging databases of genetic markers, and biopirates who help people bypass the power structures that want to own the genome markers.

Ben, pat yourself on the back... you potentially thwarted a world renowned, best-of-class spy agency from collecting invasive personal data from your very lifeblood, your children. This may be the difference between your kids being ordinary nerds taking pictures of themselves hiking through a wildlife sanctuary while uploading their location to foursquare and being falsely implicated in a plot to overthrow the government and thrown into Guantanamo Bay.

And thankfully, you didn't stop at merely declining getting your kids' DNA tested, ignoring the peer pressure of all your cool yuppie friends who did so with their kids. Instead, you blogged your decision, and thereby recording your extreme intelligence and wit in a free permanent form for the masses to consume and benefit from.

I salute you, sir. A freedom fighter to which we all should bow to.

Both USA and UK collect DNA data from the new-born children just after their birth. Yes, the New World Order.

This surveillance and all.. They want everybody to be under total and permanent control. We must stop it, while we can. Yes, adjust your priorities, freedom is much more important than security.

Do you believe it is hard to acquire someones DNA? Mammals shed DNA constantly. If you are interesting enough to people who have enough power to access PRISM you've already lost. I'm sure getting some of your DNA would be trivial.

1) the image of DNA in that picture has a huge artificial pyrene base pair in the middle (array of four green hexagons canted about 10 degrees from the horizontal plane). This would not be good for you if you had it in your DNA.

2) If you're thinking about edward snowden, I'm really not sure what you expect to be "keeping safe" from the government. unlike digital information, your DNA cannot be encrypted and you are sloughing it off everywhere you go. If the government really wants to know something about your DNA, it is TRIVIAL for them to do so. Perhaps being put into a database makes it one step easier, but it's not entirely clear to me what they would use that data for, except maybe, to try to poison you or something. Or, possible, pre-crime stuff. If the US is doing that sort of stuff on a large enough scale that you should be worried about them going through the effort of targetting you through your DNA, then you've got more to worry about because in your case the rule of law really means nothing, and there are easier, "more conventional" means for you to be subjected to the long arm of the law than those threatened by your DNA "secrets" being compromised.

This seems apropos considering the potential for genetic abuse... from /.

"Scientists Seek Biomarkers For Violence" http://science.slashdot.org/story/13/07/16/1531241/scientist...

Note that this article is based on two scientists who lost their daughter in a school shooting... implying that angry, emotionally-distraught smart people could be a powerful force in bringing the New World Order down on us.

It took a while for me to get the fine submitted article here to load. Submitting to HN must have slashdotted the author's site. Meanwhile, I read all the comments here. Even Google's cache of the article took a long time to load.

The author's concerns are largely about the privacy differences between a company based in the United States and a company based in the UK. As comments here and on the general issue of government surveillance over the past month have pointed out, that is a distinction without much of a difference. If networks don't have technical protocols that are completely proof against third-party hacking, AND protected by data privacy rules respected by all national governments, any data about you gathered by anyone might possibly be read by anyone else. After all, United States diplomatic cables that were classified and sent through supposedly secure channels are now readable by anyone anywhere in the world who visits the Wikileaks website. And so on. Without united effort by all countries and some considerable developments in technical protocols, it is doubtful that any of us have privacy from any would-be viewer--not from Al Qaeda, not from the Russian security agencies, and not from anyone.

On the broader topic of what can be known about an individual from an individual's genome, I'll share some links to some recent publications about behavior genetics. Genomes are less revelatory than some researchers supposed that they would be a few years ago. That doesn't stop individual genomes from being very good identifiers of individuals, but it means that classifying people by their genetically revealed propensity for one kind of behavior or another is probably a fool's errand.

HERITABILITY FAQ

It is well known, on the one hand, that ALL human behavioral characteristics are heritable. (It is an abuse of language to say "heritable" in this context, but the abuse is conventional and standard in the field.) So we can agree with the professional literature that your tendency to vote for one political party rather than another is heritable. Your attribution of causes for human differences (e.g., human differences in IQ) is also heritable. Your opinion about regulation of the Internet is heritable. Everything about human behavior is heritable.

Eric Turkheimer has recently been president of the Behavior Genetics Association, and he has the very kind habit of posting most of his peer-reviewed journal articles on his faculty website.

http://people.virginia.edu/~ent3c/vita1_turkheimer.htm

Lars Penke is another, younger researcher who posts most of his publications on his personal website.

http://www.larspenke.eu/en/publications/publications.html

I have the pleasure of meeting many other researchers in human genetics just about weekly during the school year at the University of Minnesota "journal club" Psychology 8935: Readings in Behavioral Genetics and Individual Differences Psychology. From those sources and other sources, I have learned about current review articles on human behavior genetics that help dispel misconceptions that are even commonplace among medically or scientifically trained persons who aren't keeping up with current research.

An interesting review article,

Turkheimer, E. (2008, Spring). A better way to use twins for developmental research. LIFE Newsletter, 2, 1-5

http://people.virginia.edu/~ent3c/papers2/Articles%20for%20O...

admits the disappointment of behavior genetics researchers.

"But back to the question: What does heritability mean? Almost everyone who has ever thought about heritability has reached a commonsense intuition about it: One way or another, heritability has to be some kind of index of how genetic a trait is. That intuition explains why so many thousands of heritability coefficients have been calculated over the years. Once the twin registries have been assembled, it's easy and fun, like having a genoscope you can point at one trait after another to take a reading of how genetic things are. Height? Very genetic. Intelligence? Pretty genetic. Schizophrenia? That looks pretty genetic too. Personality? Yep, that too. And over multiple studies and traits the heritabilities go up and down, providing the basis for nearly infinite Talmudic revisions of the grand theories of the heritability of things, perfect grist for the wheels of social science.

"Unfortunately, that fundamental intuition is wrong. Heritability isn't an index of how genetic a trait is. A great deal of time has been wasted in the effort of measuring the heritability of traits in the false expectation that somehow the genetic nature of psychological phenomena would be revealed. There are many reasons for making this strong statement, but the most important of them harkens back to the description of heritability as an effect size. An effect size of the R2 family is a standardized estimate of the proportion of the variance in one variable that is reduced when another variable is held constant statistically. In this case it is an estimate of how much the variance of a trait would be reduced if everyone were genetically identical. With a moment's thought you can see that the answer to the question of how much variance would be reduced if everyone was genetically identical depends crucially on how genetically different everyone was in the first place."

Johnson, Wendy; Turkheimer, Eric; Gottesman, Irving I.; Bouchard Jr., Thomas (2009). Beyond Heritability: Twin Studies in Behavioral Research. Current Directions in Psychological Science, 18, 4, 217-220

http://people.virginia.edu/~ent3c/papers2/Articles%20for%20O...

is another interesting review article that includes the statement "Moreover, even highly heritable traits can be strongly manipulated by the environment, so heritability has little if anything to do with controllability. For example, height is on the order of 90% heritable, yet North and South Koreans, who come from the same genetic background, presently differ in average height by a full 6 inches (Pak, 2004; Schwekendiek, 2008)."

The review article Johnson, W. (2010). Understanding the Genetics of Intelligence: Can Height Help? Can Corn Oil?. Current Directions in Psychological Science, 19(3), 177-182

http://apsychoserver.psych.arizona.edu/JJBAReprints/PSYC621/...

looks at some famous genetic experiments to show how little is explained by gene frequencies even in thoroughly studied populations defined by artificial selection.

"Together, however, the developmental natures of GCA [general cognitive ability] and height, the likely influences of gene-environment correlations and interactions on their developmental processes, and the potential for genetic background and environmental circumstances to release previously unexpressed genetic variation suggest that very different combinations of genes may produce identical IQs or heights or levels of any other psychological trait. And the same genes may produce very different IQs and heights against different genetic backgrounds and in different environmental circumstances. This would be especially the case if height and GCA and other psychological traits are only single facets of multifaceted traits actually under more systematic genetic regulation, such as overall body size and balance between processing capacity and stimulus reactivity. Genetic influences on individual differences in psychological characteristics are real and important but are unlikely to be straightforward and deterministic. We will understand them best through investigation of their manifestation in biological and social developmental processes."

Turkheimer, E. (2011). Genetics and human agency (Commentary on Dar-Nimrod & Heine, 2011). Psychological Bulletin, 137, 825-828. DOI: 10.1037/a0024306

http://people.virginia.edu/~ent3c/papers2/Articles%20for%20O...

reemphasizes the point that a heritability calculation tells us nothing about subject to environmental influences a human trait is. "That heritability depends on the population in which it is measured is one of the most frequently repeated caveats in the social sciences, but it is nevertheless often forgotten in the breach. (For example, it is nearly meaningless for Dar-Nimrod and Heine to note that 'heritability [of intelligence is] typically estimated to range from .50 to .85' [p. 805]. The heritability of intelligence isn’t anything, and even placing it in a range is misleading. Making a numerical point estimate of the heritability of intelligence is akin to saying, 'Social psychologists usually estimate the F ratio for the fundamental attribution error to be between 2.0 and 4.0.') The observation that genotypic variation accounts for 90% of the variation in height in the modern world depends on the variability of genotype and environment relevant to height. Among cloned animals with widely varying diets, body size is perfectly environmental with heritability of 0; in genetically variable animals raised in identical environments heritability is 1.0. This is no mere statistical fine point: it means that the entire project of assessing how essentially genetic traits are in terms of measured heritability coefficients is a fool’s errand."

I can't imagine a future or situation where the NSA would possibly want or need this information. I could imagine US immigration or US health insurance asking for this information if they decided to move to the US, but in both cases, they just ask for the information before allowing you to use their services.

This article is almost a parody.

You don't have to give the real identity of the person whose sample you're supplying, you're entirely free to give someone else cash to make the purchase on your behalf.

Very thought provoking and not something I'd considered. My wife is keen on some genetic testing and we had been looking at US based companies. Will think again.