Get Your Genotype Tests Now Before Congress Makes Them Illegal

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Purveyors of illegal genetic information?

A couple of weeks ago, we saw the sorry saga of the Food and Drug Administration stomping on the effort by the direct-to-consumer (DTC) genotype screening company, Pathway Genomics, to offer its tests through drugstores. Pathway had reached an agreement with Walgreens to sell its test kits over-the-counter in its 6,000 or so stores. The FDA sent a threatening letter asking Pathway to justify the unregulated sale of a "medical device" to the public, and Walgreens backed away from its deal with the company.

Testing might finally reveal the mutations that produced Waxman

Now the Congressional nanny-in-chief and head of the House Energy and Commerce Committee, Rep. Henry Waxman (D-Calif.) is demanding information by June 4 from three DTC companies, Pathway Genomics, Navigenics, and 23andMe. As Bloomberg reports:

The lawmakers gave the companies until June 4 to submit documents on the ability of the tests to identify consumers' risks for illnesses. The legislators also requested information on the proficiency of the companies' lab testing, policies on consumer privacy and whether the kits comply with FDA rules.

Tell Congress chromosomes are fun!

Some purchasers of the screening tests may be dissatisfied with their experiences, but I would suggest that most are first-adopter types who recognize the current limitations of genetic screening science. The way that consumers learn about the upsides and downsides of new products is to try them out; just as the way companies learn how to improve their products is through customer feedback. As often occurs, the "I'm-from-the-government-and-I'm-here-to-help" types are eager interfere with this kind of speedy social learning.

If you've been thinking about buying a gene screening test, you might want to go ahead now before Congress and the FDA make it illegal for you to get this kind of information. Just saying.

Disclosure: I am a happy customer of 23andMe (though I really wish their test had screened for the APOE4 allele associated with a much higher risk of Alzheimer's disease). Given this news, I am going to order a new test from another company today. I own no stocks in any gene screening companies. Finally, my article on the joys of DTC gene screening and the exaggerated concerns over genetic privacy has at last been submitted to my editors at Reason who are now busy making improvements to it.

NEXT: Reason Writers on the Videotaped Radio: Matt Welch Debates H1-B Visas With Thom Hartmann

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  1. Looking forward to the article as I am interested in purchasing such a service but have not done so due to (perhaps uneducated) privacy concerns (don’t want the Fat Man or insurance companies to get ahold of the data).

  2. I fucking hate Waxman more that I thought possible. I have stock in a startup that is getting into this field, and they are getting their series A funding right now.

    It is astonishing how much Congress fucks the economy, day after day, in a recession. Obama is the worst fucking president since…I don’t even know who. Every person in his administration is dumber than Jessica Simpson and thinks they are geniuses. I cannot wait for their defeat.

    1. I am absolutely stunned at how aggressively destructive the Democrats have been this go around. Normally, they will moderate their politics and economics enough to avoid killing the Golden Goose during hard economic times. Hence you get seemingly anomalous behavior like Carter introducing deregulation.

      Now, of course, the level of stupid, knee-jerk emotionalism is so high that no scintilla of reason can be ascertained. Right now, they should be slashing and burning and doing everything to promote a recovery. That done, they get re-elected, then they can try to slowly strangle the Goose for some new vote-buying programs. Evil, but at least rational in a limited, shortsighted way.

      1. It’s because they truly think they are brilliant because every one of their supporters with suck their cock/lick their pussy without the tiniest hesitation. It really is ridiculous.

        1. Skepticism and high standards are sadly missing from the voter mindset these days. Especially on the left, but it’s a near-universal problem.

          I’ve held my nose and voted for candidates who were less than ideal, but I’ve never pretended that such candidates–win or lose–were anything other than imperfect.

      2. PLib OT:

        The Encore channels are running the pilot to the Remo Williams TV series that never made it off the ground. But it is listed as the Fred Ward movie.

        1. What?!? What is this?

        2. I am yet more stunned! Can it be?

          1. Wiki

            In 1988, an American television pilot, Remo Williams, aired but did not lead to a series. It starred Jeffrey Meek as Williams and Roddy McDowall as Chiun.

            1. I flipped by it this morning. I was all like: “That’s not Fred Ward. Hey, that’s not Joel Grey, either!”

              1. No position on Meek, but Roddy is a reasonable substitute for Joel. You’d think by 1988 they could find an actual Asian to portray a Korean, though.

                There is no reason on God’s green Earth (mostly located in Korea), that the Destroyer series couldn’t be on TV. Following the books more closely, of course.

                1. Meek has very, very large hair it in. Like Swayze in Roadhouse but curlier. I only watched a few minutes and then recorded the off-set showing on the West Coast feed to get it all.

                  1. I can’t decide whether I want to see it or not. Perhaps you should act as our filter.

                2. Your confused that white western society can not put on a TV show that properly captures the beauty that is Sinanju?

                  1. Exactly. Man, I’m disappointed that there’s nothing like this in the works.

            2. Additionally, Encore occasionally runs the failed The Man Who Fell To Earth pilot as well.

              1. With Mike Nesmith instead of David Bowie?

                1. It was this one.

                  Also, AbeBooks has a fairly good and inexpensive selection of the pre-#50 Destroyers.

                  1. Can I combine into one, massive shipment?

                    My wife is already annoyed at my thousands of books. Then again, what’s fifty more?

                    1. AbeBooks does let you save on shipping for orders from the same store. It’s just a portal for small used bookstores to sell on-line.

                      A publisher put out the first 5 in tpb in 2002. They are ridiculously expensive for 40,000 word novels.

                    2. Also on the publishing front… The Fuller Memorandum, the 3rd Laundry Files novel by Charles Stross is coming out July 6th in hardcover.

          2. Pro’L Dib, I made a reference to Remo Williams:TAB and you totally missed it. You are dead to me. DEAD I SAY!

        3. In polite society it is referred to as the Kate Mulgrew movie.

          1. Oh, be quiet.

          2. Shut the fuck up, Aslan Baggins.

            1. I don’t even have a cat. That was just a stupid cat name I made up.

              I did, however, have a beagle named Charles Darwin during my junior high nerd days.

          3. Why are you always on about Kate Mulgrew, anyway? It’s not like she’s the proximate cause of Obama’s election to the Senate or something.

            1. I think you’re confusing Kate Mulgrew with Gates McFadden (mrrrraaawwww!).

              1. Jeri Ryan gave us Obama.

                1. He probably would have won anyway, even without Jack Ryan’s penchant for teaching Seven of Nine that resistance was futile.

                  1. People would vote against Mr. Jeri Ryan? I think not.

        4. Next Tuesday, 8 AM. I’m there.

      3. Perhaps the Uber-Morlocks have died out and no one controls the Warrior Morlocks any more.

    2. In his campaign speech for Boxer, he said, “Let’s face it this has been the toughest year and a half since any year and a half since the 1930s.”

      Tell that to FDR and LBJ.

      What a fucking piece of Affirmative Action.

    3. That’s the thing about Waxman, no matter how much you think your hate for him is maxed out, just wait a little while and he is guaranteed to do something to make you hate him even more.

  3. The government doesn’t want anyone having your DNA information….except them.

    1. Yeah, I think this is a big part of it.

    2. No, the government doesn’t want anyone selling your DNA information except them.

  4. LOL, Looks like someone has bought and paid for Congress yet again.

    Lou
    http://www.complete-anonymity.at.tc

  5. Some purchasers of the screening tests may be dissatisfied with their experiences, but I would suggest that most are first-adopter types who recognize the current limitations of genetic screening science.

    Do you have any evidence for your “suggestion”?

    Most people today see genetic testing the same way the Babylonians viewed astrology, so you have to be concerned about questionably accurate tests of this sort for the same reason we used to have to be concerned about fortune telling — people can be manipulated into doing all sorts of irrational things if they think they know their future.

    1. Granted all of your concerns are true, Tulpa:

      Do you think that justifies banning these tests? If so, are there any other sources of information that you’d like to shut down because stupid people might do stupid things?

      1. For cryin’ out loud, the government has yet to ban practitioners of chiropractic medicine.

        And they’re worried about an emerging science?

        1. +1000

      2. MSNBC?

    2. I’d be less concerned about the accuracy of the company’s test results (only a little) than I’d be about the strength of the genotype-phenotype associations they’re making.

      23andme will tell you that OPRM1 homozygous variants are more likely to become addicted to heroin. The more important effect (that they don’t mention) is that homozygous variants need much higher opioid doses to achieve pain relief. There’s a clear gene-dose effect between OPRM1 and dosage requirements for opioid pain relief.

      THAT’S information surgical and other pain patients and doctors should know.

      23andme completely misses the boat on many of their interpretations.

      *That’s* why they should be questioned.

      Many laboratories provide crappy results interpretation, though, so I’m not just badmouthing the DTC companies.

      1. Bronwyn: Good point about the opioids, but perhaps that information may not be supplied because of spillover concerns about federal overzealousness with regard to prosecuting doctors who specialize in pain management.

        I think that 23andMe’s reporting is very cautious relying on studies that have been replicated numerous times, thereby missing some cutting edge stuff. Fortunately, if you want to explore more, the company let’s you download your raw data and you can process it through the online Promethease program.

        In any case, your complaint about 23andMe is exactly what I’m talking about when I say that interactions between customers and companies improve products and services.

        1. You sort of answered my question below. So is the downloadable data “complete”, for some reasonable definition of complete.

          1. Download your mitochondrial and Y chromosome DNA data, as well as data for nearly 600,000 other positions.

            From the 23andMe website^^^

            Im guessing that isnt “complete” in the sense I was wondering. Sounds like you get all the mitochondrial and Y information and a lot of other stuff, but not everything on all 23.

            1. Im guessing the “complete” option I would want would run a bit more than $499.

        2. Out of curiosity, what do they have to say about MTHFR C677T and A1298C?

          1. Bronwyn: They test for MTHFR C667T, associated with risks for having babies with neural tube defects. They cite 2 studies below. They give it two stars for research confidence which in their nomenclature means “preliminary research” that needs to be confirmed.

            A quick look didn’t turn up anything on the homocystinuria allele A1298C. But did find a little bit of info over at SNPedia.

            Citations
            Boyles AL et al. (2006) . “Neural tube defects and folate pathway genes: family-based association tests of gene-gene and gene-environment interactions.” Environ Health Perspect 114(10):1547-52.
            Botto LD, Yang Q. (2000) . “5,10-Methylenetetrahydrofolate reductase gene variants and congenital anomalies: a HuGE review.” Am J Epidemiol. 862-77.

            1. That’s what I figured they’d focus on.

              I was reading up on these today for a project, but the focus was on the significant association between 677TT and schizophrenia in males, and between 1298CC and bipolar disorder in females.

              We run MTHFR, sometimes along with FII and FV, as a “coag” panel, frequently for women whose location is cited as LDR.

              1. MTHFR sounds like the license plate for a guy way too into MILFs.

            2. This is pretty good stuff Ron. However, MTHFR C667T may be indicative of increased risk of nueral tube defect, but I would argue that proper maintenance and monitoring of of both B12 and folic acid levels in the expectant mother will do more from a practical medicine POV than having this test done would in preventing neural tube defects. Knowledge about one’s condition is everything and would be helpful in identifying at risk mothers and possible gestational complications.

              1. Of course it will, but telling a woman that her risk is double might encourage to take her folates.

    3. Tulpa: First, keep in mind that fewer than 100,000 people have taken such tests, by definition they are a band of first-adopters.

      As for users recognizing the limitations of current tests, take a look at this 2009 study in Genetics in Medicine where researchers report: “We found no evidence that those who considered or sought testing were inclined to overestimate the contributions of genetics to common health conditions or to underestimate behavioral risk factors.”

      Given my interactions with people who have taken genotype screens, I must disagree with your characterization that “most people today see testing the same way the Babylonians viewed astrology….”

      Instead of irrational reactions, the above referenced study found that many consumers whose tests suggested that they were at higher risk for some diseases were motivated to engage in more healthful activities such as losing weight and exercising more.

      1. And if something in my horoscope motivates me to do engage in more healthful activities such as losing weight and exercising more, does that legitimize astrology??

        1. No. But does the fact that Venus is Scorpio suggest such activities?

          1. Don’t know, I’m not an expert.

            1. I continue to be shocked how many people will still ask for your sign. And then discuss it with a straight face.

              1. I had an extremely superstitious girlfriend who broke up with me when she found out my “true” birth date put me in a different sign than the day of the C-section, which was 14 days earlier. She really didn’t like Capricorns.

                1. A likely story Tulpa. She didn’t like your Vulcan half and your propensity to bring a Timex and thermometer into the bedroom.

                  1. That one actually preferred the kitchen for some reason. We never put the timers or the T-sticks to good use, though.

                    1. Perhaps that was the deal breaker. You really should indulge your human side more, Dr. FuddyDuddy.

        2. I was thinking more like a person who thinks they’re going to die young because of a genetic test selling everything they have and living a dissipative lifestyle.

          1. I would suggest that such people would be prone to do so absent a genetic test suggesting a short lifespan. I’ll they put a lot of stock in the advice of a fortune teller, palm reader, or numerologist predicting the same thing.

            And I’m not suggesting that genetics screening is bunk at all, but as Bronwyn astutely points out, it is expertise in interpretation of these results that is critical.

          2. They have an app for that! 🙂

    4. Tulpa–For the federales to *ban* something, they should have to pass muster on an extremely high bar of requirements: direct harm to the user, fraud, unrecoverable safety issues (think My Lil’ Chainsaw?), and one taken on a super-majority vote, not simply on the power-mad scrabblings of a pig-faced, mud-fucking committee chair.

  6. The left is scared to death of a fundamental fact: People are different, and a large part of those differences are the result of genetics. As people are finding this out, the entire leftist project of equality of outcome has been shown to be an illusion.

    Some people are smarter than others, some people are more attractive than others, some people are less likely to commit crimes than others, some are healthier than others, some are more faithful mates than others…and a whole lot of it is genetic. The fact that (1) people will realize this and (2) private individuals could choose to discriminate on the basis of genes scares leftist to death (remember GATTACA?).

    1. This is not new information, qwerty. It was already well-known that people are different.

      1. But for some strange reason, many left types seem to think they can will us all equal.

      2. Yeah, but a lot of people deny that genetics is the cause. How often have you seen a newspaper article about high school dropout rates that said, “As we know, some people are genetically incapable of getting a high-school level education, and therefore a graduation rate of 75% is probably the best we can do if we want to uphold standards.” How often have you seen one that said, “It is difficult to get out of poverty. Part of this is cultural. Part of this is the fact that poor children are more likely to have inherited genes that contributed to their parents’ poverty.” Good luck searching today. 30 years from now, though, it will be a lot harder to hide the truth.

      3. To reasonable people, yes, but it might also become an unavoidable truth for leftists.

  7. “23andMe”

    I’ll take things my extra chromosome would say, Wink.

  8. Do any of these companies give you a complete gene map (forget the fancy term for that) regardless of whether they know what it does?

    I dont care about interpretation, Just give me a listing and I will worry about interpretation later (especially since it may be later before they can be interpreted).

    I mean, I dont mind having stuff pointed out, but from what I remember, they only give you sections, specifically sections they can interpret (at least somewhat) now. Give me a bunch of 1s and 0s (or ACTGs).

    1. You’ll get a listing of base calls at a (very) long list of rs#######. They’re variant sites, some with good association data, some with none, some with contradictory data.

      Given the list, good search skills, and a healthy understanding of how to read the literature, and you’d be good to go.

      (All that said, I’d happily offer some interpretive assistance on a freelance basis.)

      1. “I’ll read your genome for you” is a pretty lame pick-up line.

        1. I dunno, “I’m a doctor,” has opened a door or two for me, but I am loath to default to it.

          1. I can say “I’m a doctor”, but then am forced to hear “oh, but you’re not a REAL doctor!”

            1. I hate that. I really do. If you have a PhD in a hard science, then I think the title of “Doctor” is warranted. I have found it’s mostly the pretentious assholes with an obscure PhD in underwater basket weaving of the Maori (and others, particularly doctorates in education and poli-sci) that say, in that haughty voice “That’s DOCTOR so and so!” As you pointed out the last time Ron wrote about this ,you stated (paraphrasing) it can be a real bitch to get physicians to be up to date on the latest genetics breakthroughs, tests, and proper interpretations of results and how those results relate to the delivery of care.

              1. I didn’t mind it at first, but in the past few years I’ve gained a much better appreciation of my own skills and am much more comfortable with introducing myself as Dr. Bronwyn.

              2. A fucking veterinarian pulled that on me when I called her Ms. the other day.

        2. Good thing I’m not looking for a date, then 🙂

  9. I am not sure how effective these tests are at determining disease potential. This is not something that you should do yourself without having a doctor review the results and having a competent genetic counselor. Also, if these tests are ineffective, is this a good use of health care dollars. I don’t think the bioethicists think so.

    1. Fuck the bioethicists.

    2. If someone buys them OTC, it’s really none of your fucking business whether they’re a good use of health care dollars. They could buy a case of gold plated aspirin and shoot it into space unopened for all that it would be your business.

  10. robc: See above. But sounds like you’d like something more than a genotype screening tests which just checks for SNPs. The good news is that whole genome sequencing should be available for than $1,000 in a couple of years, if Congress will let them On the other hand, working out what it all means will take some time. You might look into the non-profit Personal Genome Project which is seeking 100,000 volunteers to contribute their genetic, physical, and medical information as a way to help researchers figure out the contribution of genes to various traits. I have applied to join, but haven’t heard back yet.

    1. I cant remember, but you linked to that before and I think I applied or decided it was too much work or something.

      But yeah, Im waiting for the whole genome sequencing to be in the 1k range.

      1. Yeah it was the latter. 🙂

        1. The latter being that vague nebulous “something”? 😉

  11. Damnit. I wish I could afford to purchase a genetic screening test at the moment. Have to finish my degree first. I hope these are still legal at that point, and if not I’m going to be FUCKING PISSED OFF.

    1. It will be legal in Asia. Once the genie is out of the bottle, it can’t be put back in.

      1. I believe I Dream of Genie put an end to that fallacy.

  12. Now the Congressional nanny-in-chief and head of the House Energy and Commerce Committee, Rep. Henry Waxman, …

    Is there anyting that says congressional idiocy that doesn’t have Waxman’s name attached to it?

    1. It like the first thing that pops in his head after he slithers from the pit of filth he sleeps in is “What’s the stupidest thing I can do with my day?”

      1. It has to pass his sniff test first.

        1. Which is considerable given is monstrously huge nostrils. I’m pretty sure he got fistfucked by Pelosi in both of them. At once.

  13. Guess what? I don’t know jackshit about the human genome.

    Yet I can still confidently predict than congressional interference with testing kits will be counter-productive.

    Funny how that works out.

  14. I want the test that will tell me how much Neanderthal genetic material I have inherited.

      1. Even if I were a Neanderthal, I couldn’t have inherited ALL of the genetic material of the species, Pip.

  15. the Congressional nanny-in-chief and head of the House Energy and Commerce Committee, Rep. Henry Waxman

    Waxman!

  16. MTHFR sounds like the license plate for a guy way too into MILFs.

    I was thinking more like the gene responsible for going into politics, based on how often politicians cause me exclaim “Motherfucker.”

  17. Thanks for the short and sweet expression of what I’ve been thinking. I’m concerned about paternalistic politicians seizing on genetic testing as an issue, partly because (full disclosure) I work in the biotech inductry, and partly because I’m working with a group of citizen scientists who are using personal gene scan information to build self-organized clinical trials (including a study on MTHFR variants). It would be devastating to these efforts to lose access to genetic information.

    Please see the Personal Access to Genetic Information petition I started at the Petition Site. If the link doesn’t appear below, just search on “Personal Access to Genetic Information”.

    http://www.thepetitionsite.com/1/mydna

  18. The current 23 and me test does indicate ?4 variant of APOE, so you may want to just request that they retest. We’re distant cousins by the way; I’m also an Ursala’s child, U5a2a.

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