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Should Patients Have the Option To Not Know Their DNA?

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.'"

22 of 157 comments (clear)

  1. Op Out Knowledge? by wisnoskij · · Score: 4, Insightful

    I do not think there is a single law on the books that makes it illegal not to know something. All knowledge is op-out-able, as far as I am aware, no one is likely ever going to force you and everyone else to know something.

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    Troll is not a replacement for I disagree.
    1. Re:Op Out Knowledge? by rtb61 · · Score: 2, Insightful

      Knowledge is choice, without knowledge there is no choice. You can not choose to ignore knowledge, you are only in ignorance embracing ignorance. However DNA knowledge should be very tightly restricted with severe penalties including imprisonment, otherwise you will be 'opening up' people to organ donor bounties.

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      Chaos - everything, everywhere, everywhen
    2. Re:Op Out Knowledge? by TheRecklessWanderer · · Score: 4, Funny

      Yes you just stick your fingers in your ears and say LA LA LA LA LA LA LA when they try to tell you.

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      Mean what you say...say what you mean.
    3. Re:Op Out Knowledge? by Luckyo · · Score: 3, Interesting

      This is false due to the problems that arise from psychosomatic influence if the knowledge.

      Just knowing that you have a chance to be inflicted with illness will likely increase chance to get this illness, or at least some of its symptoms, causing the real problems.

      This is why dispensing knowledge to patients is always difficult. Not only must doctor consider the illness itself, but also the psychosomatic effect of knowledge on the patient.

    4. Re:Op Out Knowledge? by Cenan · · Score: 2

      Not knowing is akin to not opening that envelope from the bank you know contains your next mortgage payment reminder. It's not going to go away just because you put your head in the sand. It is a proven fact that early diagnosis significantly improves the chances of being cured or having comfortable life.

      I doubt anyone is going to force you to know your faulty DNA, but opting out of knowing if given the choice is just stupid, and potentially very expensive - because you will change your mind on having that treatment once the symptoms appear, which might very well be too late.

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      ... whatever ...
    5. Re:Op Out Knowledge? by pepty · · Score: 2

      Meh. People will be posting their results on facebook soon, if they aren't already. The real challenge will be for people who would like their genetic information kept private (or don't want to know test results) but who have relatives who like to share everything online.

    6. Re:Op Out Knowledge? by cstacy · · Score: 2

      The information that they're wondering if they should give you is often faulty, and results in people making bad choices. For example, undergoing preventive therapy that is costly, has serious side effects, and turns out to have been totally unnecessary. You weren't going to get that disease that you decided you needed to be treated for. Meanwhile, it caused you health problems, and untold mental agony, anda lifetime of worrying. Also for your relatives (children and parents). By giving them this information, you have failed to "First, Do No Harm."

      If the genetic analysis were more reliable (like everyone reading this story probably assumes), it would be different. But currently, for most of the information that can be given, it's very dicey.

    7. Re:Op Out Knowledge? by bickerdyke · · Score: 2

      No. It only becomes a problem when you break it. And even then you won't be fined for not knowing the law, but only the offence at matter.

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      bickerdyke
    8. Re:Op Out Knowledge? by sg_oneill · · Score: 2

      Theres a lot of DNA conditions that are straight up "You wont live to 50 and theres nothing you can do to make it better" type things. Frankly for a young person, its better to just not know and go and live a healthy and normal life until the bloody thing reveals itself, than living a life in misery under a death sentence.

      Living in ignorance isn't living a lie, knowing the truth and going on like its not real , however is.

      Frankly, I'd take the ignorance.

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      Excuse the Unicode crap in my posts. That's an apostrophe, and slashdot is busted.
    9. Re:Op Out Knowledge? by Kjella · · Score: 2

      Assuming there's anything useful you can do about it, For example, say that gene X means I'm ten times as likely to develop incurable condition Y, but it's a 0.1% chance as opposed to 0.01% chance in the general population. Is that going to help me in some way? If you get a long list of potential illnesses that you might be somewhat predisposed to does that do anything other than turn you into a hypocondriac? Tell me what I need to know for treatment or symptoms to look out for or lifestyle changes, the rest which may or may not come but is a throw of the dice just keep it in my journal so you know to look for it later. I don't need to hear that I'll get Alzheimer in 40 years, really I don't.

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      Live today, because you never know what tomorrow brings
    10. Re:Op Out Knowledge? by RDW · · Score: 5, Insightful

      People (and genetic risks) are different. One person's 'making the most of my time left' is another's 'spending decades with the constant threat of a terrible disease blighting my life'. In Jim Watson's case, he was already at an age where presumably he'd made adequate provision for his loved ones (the link is with late, rather than early onset dementia). Knowing that he might be at increased (but very far from absolute) risk of losing his mental faculties late in life wasn't useful information to him, but might have led him to worry about something he could do nothing about. It's not hard to think of other scenarios where an individual may make the (perfectly valid) choice to not know everything about his genome.

    11. Re:Op Out Knowledge? by interkin3tic · · Score: 4, Informative

      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. 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 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.

  2. Should know ! by invictusvoyd · · Score: 3, Insightful

    It's like doing a blood test in the 17th century and asking if you'd like to opt out on your WBC count !!

  3. Genomic Medicine will probably be required by mtippett · · Score: 3, Insightful

    As Genome Wide Association Studies begin to crack more of the genomic puzzle, there will be tighter and tighter direct correlation between medicine types & doses and the effectiveness of those drugs. As this efficacy increases, it is highly likely that the best insurance coverage will be based on genomic information.

    Determining precise doses of a drug and which drug should be used is going to make for much better quality of medicine. I would expect that in a couple of decades people are going to look at the drug practices of today and laugh that we are pretty much throwing darts at the drug dartboard and choosing whatever it lands on.

    Opting out of specific tests will be like not wanting X-Rays to see if a bone is broken.

    1. Re:Genomic Medicine will probably be required by pepty · · Score: 2

      As this efficacy increases, it is highly likely that the best insurance coverage will be based on genomic information.

      Actually no; that's been illegal for a few years now:

      https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act

  4. Knowledge is Power by Rollgunner · · Score: 4, Insightful

    If you know that you may be more likely to get cancer, then you can get tested more often and aggressively, increasing the chances that your cancer will be treatable.

    I suppose on the other hand, if you worry so much thinking that you might get cancer you could die of a stress-induced heart attack or something.

    Generally speaking though, forewarned is forearmed, and if the susceptible are more aggressively screened and treated, then it could well take away a lot of the "cancer is a death sentence" mentality that many people have.

    I suppose it'll come down to personal decisions, but I sure wouldn't want to die of a condition that I was genetically predisposed toward, that was treatable and that I never got tested for because I was afraid the answer might be "yes".

    1. Re:Knowledge is Power by Anonymous Coward · · Score: 3, Informative

      "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

    2. Re:Knowledge is Power by stoploss · · Score: 2

      If you know that you may be more likely to get cancer, then you can get tested more often and aggressively, increasing the chances that your cancer will be treatable.

      That's sort of a 20th century mindset. The current consensus seems to be in favor of backing away from annual mammograms, not checking PSA, not doing routine dental x-rays, etc. The problem is that with all these screenings we have introduced ironic iatrogenic issues: treating benign conditions because test results were weird (or false positives). In the end, the data shows this isn't improving outcomes. Just imagine if you had your prostate nuked because your PSA was positive, and you lost your ability to achieve an erection for the rest of your life, then five years later it turns out studies say, "oops, that wasn't really necessary!"

      Extrapolate this to GWAS type stuff and you get the picture. I mean, I'm not arguing the information should be withheld from people who want it, but I strongly believe people shouldn't be forced to learn or disclose this data.

      Generally speaking though, forewarned is forearmed, and if the susceptible are more aggressively screened and treated, then it could well take away a lot of the "cancer is a death sentence" mentality that many people have.

      Those cases where forewarned doesn't help are definitely at issue. The classical example is Huntington disease. It's an autosomal dominant death sentence and there is no treatment or way to alter the course of the disease. Some people don't want to know. There is actually a very elaborate three-phase commit for testing/getting results for Huntington disease, and geneticists won't perform the test on a minor.

  5. Sounds like security through obscurity. by StormRider01 · · Score: 2

    Works ever time, right?

  6. Sounds like derp. by Anonymous Coward · · Score: 2, Insightful

    Parrot more cliches, and be sure to post your social security number, home address, mother's maiden name and date of birth here to Slashdot.

    Security is an onion. Obscurity is a valid layer. Stop posting ignorant battlecries.

    1. Re:Sounds like derp. by hazem · · Score: 4, Informative

      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.

  7. Re:Other similar situations by RDW · · Score: 2

    wasn't there a discovery that determined if you were likely to commit a crime? Or be serial killer or something like that?

    How did that work out / what ever happened with it?

    90% of murderers, and 99% of convicted rapists, have a copy of the SRY gene, which is much higher than its frequency in the general population (about 50%). SRY has been linked with aggressive behaviour, autism, and a preference for large, fast cars.