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Should Patients Have the Option To Not Know Their DNA?

Posted by Soulskill on from the only-tell-me-what-i-secretly-want-to-know dept.

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.'"

10 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.

    --
    Troll is not a replacement for I disagree.
    1. 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.

      --
      Mean what you say...say what you mean.
    2. 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.

    3. 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.

    4. 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.

  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

  5. 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.