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Biotech Medicine

Should Patients Have the Option To Not Know Their DNA? 157

An anonymous reader writes "Genome sequencing is getting faster and cheaper every year. This article points out that in the not-too-distant future, a DNA test will be a common diagnostic tool for doctors. It's a good thing for figuring out what's wrong with you — but there will unintended consequences. The test will also return information about conditions and diseases you're likely to get, which will spur more frequent testing — which can be extremely uncomfortable and/or expensive — as well as more frequent worrying. Should people be able to opt-out of this knowledge? Even if they do, should the information go into the patient's medical record? It likely will, and then the next doctor may be in the difficult position of not knowing what she can discuss with the patient. A new decision from the American College of Medical Genetics has recommended giving patients the option of not having the information gathered at all. It can get more complicated, too: '[G]eneticists and bioethicists are already discussing scenarios where patients may approach such decisions more like a menu, saying they want to know about increased risk of heart disease but not cancer, for example.'"
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Should Patients Have the Option To Not Know Their DNA?

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  • by Anonymous Coward on Wednesday April 02, 2014 @12:47AM (#46636643)

    "Even if we postulate an 1:1,000,000 ratio of claimed discoveries to data items, there are zillions of discoveries that can now be claimed every day. Based on what we have started to surmise empirically, most of these claimed discoveries are likely to be either totally false preliminary observations (Ioannidis, 2005) or substantially exaggerated results (Ioannidis, 2008), a consequence of the extreme multiplicity of the probed data-space, the winner's curse (Zollner and Pritchard, 2007), and other biases. “Negative” results have almost disappeared from many scientific fields, especially those with “softer” measurements and more flexible analytical tools (Fanelli, 2010). Results procured by the most popular research sub-fields seem to have the lowest reliability (Pfeiffer and Hoffman, 2009). It seems likely that there is an extraordinary large number of small, weak effects and links (“risks” in epidemiological language), barely discernible from measurement error and diverse potential biases."

    "Genetics can revolutionize medicine and drastically improve outcomes, or may lead to the adoption of millions of genetics-based tests and interventions that are false, useless, costly, or all of that. "

    http://journal.frontiersin.org/Journal/10.3389/fgene.2013.00033/full

  • Re:Sounds like derp. (Score:5, Informative)

    by hazem ( 472289 ) on Wednesday April 02, 2014 @03:20AM (#46637133) Journal

    I like to think of it it his way. A soldier wears camoflage in the field to help protect him from being shot. Being able to not be seen against the background terrain is a form of obscurity and it is effective because it helps keep bullets from being aimed directly at the solider. The downside is that it's not particularly effective at stopping a bullet aimed at the soldier.

    Body armor is different in that it's particularly useful when bullets are being aimed at the soldier. It can stop a bullet that camoflage clothing will not. While at the same time it, its downside is the limited mobility and extra heat.

    Now, an even better measure of security than just either one of them is to use both. One helps keep you from being shot at while the other helps protect you when you are shot at.

    Wouldn't you rather have both when you're a soldier in the field with someone trying to shoot at you? If you say yes, then you understand the point of obscurity in the security arena. If you say no, then that's probably a bit daft.

  • Re:Op Out Knowledge? (Score:5, Informative)

    by interkin3tic ( 1469267 ) on Wednesday April 02, 2014 @10:09AM (#46638773)
    How many diseases are there where the chances of getting it can be increased or the symptoms worsened by psychosomatic influence, yet which CANNOT be prevented or mitigated with advance knowledge? Not a hypothetical question, I honestly don't know.

    Huntington's disease is the big one people worry about with genetic testing as there is no treatment. It looks like there's only specific conditions under which it can go either way [wikipedia.org]. If there's literature showing that the 36-39 range can be affected by psychosomatic effects, I didn't see it on google. I did find this [psychosoma...dicine.org] which looks like advance knowledge of huntington's disease is helpful in the long run. At the very least, you can plan ahead.

    Other diseases like predisposition to cancer, there's clear benefits to knowledge. If you know you are likely to develop breast cancer due to BRCA mutations, you're clearly better off knowing that than not. If you have a mastectomy because of that knowledge, then that more than negates the increases in risks due to psychosomatic effects.

    More common diseases like diabetes, high blood pressure, and obesity, knowledge you're predisposed to that genetically might give people an excuse to be lazy and not prevent it, but I'm guessing such people would find an excuse anyway.

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