Bioethics

From the New York Times: Another Tiresomely Misleading Bioethical Attack on Personalized Genetic Testing

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genetictesting
geneticliteracyproject

Today, the New York Times has published yet another article aiming to prove to readers that genetic testing, especially direct to consumer testing, is useless and perhaps even misleading. In her article, "I Had My DNA Picture Taken, With Varying Results," by Kira Peikoff, a bioethics graduate student at Columbia University, takes genotype screening tests from three different companies is, shocked, just shocked, to discover that the results do not all agree.

This stunt has been pulled before, most notoriously by the Government Accountability Office (GAO) back in 2010. In my article, "A Genetic Testing Dupe?," reporting on the GAO's study, I too noted that I had received differing results from the two testing companies I had used. Was I misled? Not at all.

I explained that the companies tested for different allele variants related to disease risks, which they clearly explained in their reports to customers. In my case the two companies I used disagreed about my risks for colorectal cancer, melanoma, and heart disease—all of which is explained by the way the companies select research data for determing those variant alleles for which they test.

Ms. Peikoff, to her credit, also explains this, but then pretends that it is somehow confusing. She then goes to on explain that environmental exposures also play a big role in future disease risks. Please tell us something we don't know.

As I reported in my article, I had already had a polyp removed, suffered a second-degree sunburn as a child, and my parents died of heart disease, so I would be taking those facts, as well as the genetic information the companies supplied, into account as I thought about my disease risks.  As I concluded:

The differential tests results do not bother me, and I would be surprised if many gene testing pioneer customers find the information they receive all that confusing. The results are probabilistic calculations based on a selection of low risk susceptibility alleles. The right way to think about the current direct-to-consumer genotype screening tests is that they are a preliminary technology. They offer supplementary, not dispositive information about various health risks. The tests are not perfect, but they are the beginning of the process through which consumers, physicians, and purveyors will learn how to better interpret and use genetic information over time.

We are in the Apple II era of genetic testing. It would have been silly to ban the Apple II just because it was not as easy to use or immediately comprehensible as the MacBook Air. Standardization of test results will come as more information about the interaction between genetic variants and environmental influences accumulates. The current tests function as training wheels for curious consumers who will be using the whole genome and epigenetic screening tests that will be widely and cheaply available by the end of this decade. As one of those curious consumers, I don't want or need federal regulators to protect me from my own test results.

That's still the case, although that has unfortunately not stopped the Food and Drug Administration from banning direct-to-consumer genetic testing from 23andMe.

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  1. Would the filthy rag be opposed to testing on your genetic materials by the DHS if there was a smidgeon of a chance that you were the second cousin twice removed of a goat herder in Afghanistan who once gave a Navy Seal the evil eye even though investigative testing at government facilities are notoriously inaccurate? Perish the thought.

  2. Theirs wasn’t a failure to deliver reliable results, theirs was a failure to line the right pockets first. Buckyballs’ failure to secure political patronage, and their provincialist attitude toward fighting the charges rather than knuckling under, augured a regulatory crusade that doomed the business for much the same reason. Political capitalism is first and foremost a pay-to-play arrangement.

  3. Kira Peikoff, a bioethics graduate student at Columbia University

    I can’t believe this is an actual graduate degree at an actual ivy league school. How ironic is it that she studies ethics yet pushes an agenda by being misleading?

    1. She’s got credentials, man! (Or she will soon.) We can’t have laypeople thinking they know anything about ethics without ever getting a degree!

      1. The sick thing is that “bioethics” continuously exposes itself as almost exclusively a “discipline” where the conclusion is always “don’t do this new thing, we have these following completely stupid and collectivist reasons why not, and you need to listen to me because…uh…because…”

        Basically, it’s prettied up Ludditism given some credibility by calling itself “-ethics”.

        1. It’s ludditism masquerading as reasoned opposition.

    2. Bioethics, the love child of eugenics and socialist planning to create false scarcities for the purpose of controlling resources is about systemically killing as many people as you can medically justify.

      1. Now now, Killaz. We don’t want to be Tony here. They’re not about killing people, just about making it illegal to help people live longer or better lives.

        1. Ever read a bio-ethicist writing about pulling the plug? They sound like they are pulling on something, alright.

    3. I’m surprised more people here don’t know who she is. Zakalwe mentions it downthread. Her father is Leonard Peikoff. She also wrote a shitty fiction book, which I’m not going to name, filled with scaremongering about coming biotech.

      I agree about the existence of such bullshit programs and applaud you pointing out the irony in this situation.

      I want to extend my life and augment/harden this biological shell my mind inhabits. I’ve learned to ignore anything said by “bioethicists”.

    4. It’s utilitarian ethics; the lie serves the greater good so it’s ethical.

  4. This is like banning book translations because a reader might miss out on some nuance in the original. We just can’t have people potentially confused! Therefore, no one should be allowed to read translated books except credentialed experts. Capisce?

  5. Is the rationale here really anything more than naked Statism?

  6. Is the attack here by the NYT and others of a similar bent because of CONTROL (can’t have the proles thinking about their own bodies for themselves!), because of profit (evil genetic testing companies are making money telling people that they might be at risk for disease!), because of Ludditism (people can’t know about their genetic future!) or something else–or even all of them? Because all these elements seem to be part and parcel of your typical progressive statist. It doesn’t even seem well focused; it seems to be more of just a knee-jerk reaction of NO NO NO NO NO to anything that might benefit anyone on an individual level. They seem like they can only stand collective solutions (that of course don’t ever work).

    Because this shit is so. Fucking. Tiresome.

    1. Thanks for recommending Asher’s Owner series.

    2. My guess is that the opposition to direct-to-consumer genetic testing by the NYT is based on a fundamental hatred of the very idea that a “market” may be emerging that undermines the entrenched status quo.

      e.g. academic researchers and clinical practitioners who serve existing institutions fear that genetic data unleashed upon the masses will undermine their role as gatekeepers and high-priests of the human genome; they have a vested interest in maintaining a highly rigid and cloistered system with strict federal oversight.

      there is also just an inherent objection to giving individuals *control* over their own information. They detest the idea of this invaluable human resource just being used any which way by anybody, with the potential of an emerging gap between availability of services for the Rich versus Poor. i.e. If it can’t be leveraged as a social-equity tool, they don’t want ANYONE to be able to use it.

      a second (or maybe even more primary) issue is their fear that widespread availability of genetic testing will inevitably lead to some form of self-selected social engineering where parents start actively looking to match traits or filter others out. Bio-Nazism! I think this basically echoes your last two sentences (they can only conceive of collective benefits), but I think extends to fears of a modern Neo-Eugenics or Pop-Phrenology emerging.

  7. The NYT is just trying to appeal to a populace that just elected a flat-out communist and the doomed fools who wish they had the chance to do so themselves. Everyone else reads The Post.

    1. At least the Post puts effort into its headlines, even if it’s a rag. Of course, so is the Daily News.

      1. NYC has a lot of birdcages.

        1. Just like your mom. It’s funny because it’s true!

  8. Using Paul Krugman’s logic, it’s bad BECAUSE it allows consumers to access their genetic information directly, instead of forcing them to go through an AMA approved gate-keeper.
    It’s probably also bad because it doesn’t allow the government to monitor your genetic information because it doesn’t end up in a centralize database.

    1. Paul Krugman’s views on any economic issue: Can it be done without politically ordained coercion? No? Well then it’s bad. Yes? Well then it’s so good that if anyone criticize’s it, then they’re stoopid.

      1. Krugman would be all for genetic testing if the results went into a government database. Calling the guy a piece of shit is insulting to shit.

  9. But the major issue, experts say, is that the causes of most common diseases remain unknown. Genes account for just 5 to 20 percent of the whole picture.

    Just because these home genetic tests fail to accurately divine omens is no reason to ban them.

  10. Two words: “second opinion”.

    1. which is fine as long as you get all of your opinions from politically controlled government-approved sources.

  11. My favorite part:

    The answers were eye-opening ? and I received them just as one of the companies, 23andMe, received a stern warning from the Food and Drug Administration over concerns about the accuracy of its product.

    That part contains a link to the NYT article on the FDA and 23andMe wherein the ‘concerns about the accuracy of its product’ is no such thing.

  12. Ms. Peikoff, to her credit, also explains this, but then pretends that it is somehow confusing. She then goes to on explain that environmental exposures also play a big role in future disease risks. Please tell us something we don’t know.

    Yeah, well that’s the whole fucking shtick: pretend something fairly simple that everyone either knows or can easily learn and understand is SO HARD HELP US EXPERTS.

  13. No Ayn Rand fans are going to comment on her father?

    1. Wow, I didn’t suspect that actually was her father. Weird.

      1. Serrrious.

        I saw the name and was like… ok, maybe its a common name. I guess not.

        That guy is a creep BTW. He was pro-pre-emptive Nuclear attack on Iran, any other random muslim nations post-9/11. Which is… ballsy? But, no. Not from him. Just creepy. Even Bill O’Reilly was like, hold your horses there, tough guy. he reminds me of a sensitive kid who gets in his first playground fight and goes into a kill-frenzy, gouging eyes and biting. Zero sense of proportionality. He believes that mass-extermination is the only sufficient ‘deterrent’ to our enemies.

        See here = http://www.youtube.com/watch?v=JoAWCwm-UXw

  14. Sounds like the Columbia U. “graduate student” is not necessarily…THE PIEKOFF THE LITTER, eh?!

    HAHAHAHAHAHAHAHAHAHAHAHA!

    1. Oh, that was horrible. I think I damaged an internal organ from groaning. So, two thumbs up.

  15. Kira Peikoff, a bioethics graduate student at Columbia University, takes genotype screening tests from three different companies is, shocked, just shocked, to discover that the results do not all agree.

    Kira should try and start a business and ask three different bureaucrats what forms she needs to fill out to get started or even which department they should visit first.

  16. The world is awash with academics who are sure that people are insufficiently educated to make choices for themselves.

    You can see it in all sorts of issues. Really, they’re just trying to impose their own qualitative preferences on the rest of us–if we give them the benefit of the doubt and assume they’re being dishonest.

    Any academics who honestly believe they can make quality of life choices for other people–better than people can make them for themselves–is an idiot. Only an academic could fall for such a stupid idea.

  17. Sounds like Ms. Peikoff wasn’t required to attend many classes concerning the “bio” part of “bioethics”.

    Just wait until the DIY home lab tech gets a little further…I’m doing some mad scientist shit. Not for evil, for myself.

    Which means it will be labeled as evil. Since it isn’t for the collective.

  18. I didn’t realize there was so much variability in DNA testing results. I figured it was pretty much spot on, limited only our knowledge of DNA, not by the technology used to read it. So, in that way, I think Peikoff has a point. This is not like being in the Apple II era of computing with respect to understandability. This would be more like if your Apple II produced wrong results when you asked it to do math.

    Of course the New York Times is running this because they hate freedom and capitalism and self-determination. But I don’t think you can pin that on the author of the article. She didn’t say that 23andme shouldn’t be allowed to sell their kits. She said that the results may be misleading in a way that deceives consumers. That seems reasonably possible to me.

    1. This would be more like if your Apple II produced wrong results when you asked it to do math.

      Not even close. The tests don’t produce “wrong” results by way of producing different results. They produce different results because they are using different criteria based on different data sets and analytical techniques. This is more akin to running a cost/benefit analysis on a project based on two different sets of projections and with one analysis using a different metric for benefit than the other. You’re pretty obviously going to reach different conclusions. That doesn’t make either analysis wrong.

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