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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.'"
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.
get that dang ol guvment out of my genomes thanks obama
I guess society is yet to put a version of that in law. This is the beginning of the end.
It's like doing a blood test in the 17th century and asking if you'd like to opt out on your WBC count !!
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.
Should people be able to opt-out of this knowledge?
If they couldn't, it would be interesting to know how many more people would avoid going to the doctor altogether.
Also interesting would be to know if the risk of getting a predicted illness would go up just from knowing about it.
Brave Sir Robin ran away. ("No!") Bravely ran away away. ("I didn't!")
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".
Works ever time, right?
As asked, the question seems ludicrous; "If you don't want to know, don't ask." But I am sure there are some things (venereal diseases, for example) that doctors are required to inform their patients about. The more important question is, "What will the doctor tell anyone else?" Even if I wouldn't choose to tell others, I would certainly want to know what my insurance company (again, for example) was being told about me.
It certainly would have made Gattaca a shorter movie.
Jesus was all right but his disciples were thick and ordinary. -John Lennon
If you don't care about your health, just don't go to the doctor.
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.
Some people HATE spoilers.
I don't foresee many lawsuits from patients suing from the grave for diseases they never got. But I guess we are talking about America, aren't we?
As population in US realises that many more of them can't get insurance, while the few that get insurance understand that they would likely get off much cheaper if they didn't have insurance, you'll likely see the push for universal healthcare using one of European models.
So I would suggest that beyond short term, this will likely be extremely destructive for private insurance companies.
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?
Society (in the US anyhow) already allows unrelated information to be used, for discrimination anyhow. I mean your automobile insurance costs is based on your credit history for gosh sakes. Why not allow insurance companies to reject you completely if they know you are going to get sick. I mean its not like insurance is for evening out costs or anything. Let the free market, and genetic fate determine your place/status in life.
slashdot troll = you make a compelling argument I do not like the implications of.
want's to remain ignorant, fine but the info should still be collected. It will be too valuable a tool.
The Kruger Dunning explains most post on
Yep.
Then finally we can have a decent health system.
The Kruger Dunning explains most post on
I think the general rule should be that the patient should decide about his/her own health.
I have met and heard about people that have had various conditions that have opted out on diagnosis, because they want to opt out on a certain treatment. People who have had cancer multiple times and would rather die from cancer the next time than suffer through radiation therapy and chemo, or people who have had an implanted automatic defibrillator that has provided a very painful experience.
If any kind of medical test is done, be it genetic or otherwise, then the test results should automatically only be available to the doctor who had requested the test. Permission to /portions of/ the test results should be available to other doctors only if the patient gives explicit permission.
"We mustn't be caught by surprise by our own advancing technology" -- Aldous Huxley
Spend ~65% of what we do now to recreate one of the European systems.
Spend another ~20% to make our version kick the European version's ass.
Spend the last 15% on bribes to the top stakeholders in our current system to keep them from sabotaging the new one.
What's more important: People need help interpreting DNA and other tests. And doctors, too! We're no way near deriving the best individual course of action based on statistical information.
bickerdyke
What I don't understand is why you'll have your DNA tested often. Isn't once good enough until the tech advances or is it advancing significantly yearly?
Pretty much. You would have your genome sequenced once and have the analysis updated as new correlations are validated. The exception would be testing of gene expression levels by looking at mRNA levels. Lots of diseases result in specific changes in gene expression even though the genes themselves haven't undergone any mutation; the changes in expression level can predict the course of the disease and guide therapy decisions.
It's actually a common phenomena and a strategy for managing bad news, be it about cancer or climate change. The problem arises when the person in denial does not move on to other mental states, but merely clings to denial "I don't have cancer", "there's no such thing as climate change" etc.
better make a genome-test to find out!
What I would be worried about is what happens if your insurance company finds out.
You have health insurance, you go get the test and discover that you have a high risk of heart disease or cancer.
That knowledge is now on your medical record. Your insurance company finds out about and drops your cover.
And no other company will write you a policy at a reasonable cost because your now a high risk.
... from ever seeing your genetic tests.
the effects of stress in exacerbating and causing physical ailments is one that is well understood. many people naively believe that genes are the sole exclusive means by which illness may occur, despite there being innumerable counter-examples clearly demonstrating that this is false. that does not prevent people from *believing* that genetics is the sole exclusive cause of one particular illness or another, and *for such people*, that belief, when they are presented with such "quotes truth quotes", is quite likely to result in their death, due, ironically, to stress *triggering* the very illness that is merely latent rather than active within their genes.
here on slashdot we have people who, by and large, are capable of logical and rational thought. when presented with scientific issues, they apply rational bullshit filters on the topic of for example genetics. many of the opinions marked "insightful" on this article are a clear demonstration of that. however the general population has little understanding of genetics, and many many people simply do not think "rationally".
on the whole then, if it became a *legal requirement* to *force* people to listen to a doctor telling them words which, when that person heard them, were translated in their own minds due to their lack of knowledge and self-belief, that "they were basically dead already because of their genes", i would consider such people who pushed such laws through as being severely mentally ill as well as their actions being morally reprehensible.
answer: no. it is highly irresponsible to force absolutely everyone to listen to something that they are not fully equipped to comprehend.
1. Sequence everything
/certain/ question. So answer this specific question only but keep the data to answer potential other questions later.
2. Screen for the disease as requested, and only give this information to the doctor
3. Keep the data in case more questions are asked
4. You can thank me later
I don't see a problem. A patient undergoes a DNA test to answer a
What I don't understand is why you'll have your DNA tested often.
Because (a) it will be a routine part of your examination, and because medical records are not easily shared between providers they can't just look it up in your file and (b) they won't be full genome analysis (just looking at certain different things at different times) and (c) the "raw data" won't be easily available. When the storage and sharing (and privacy) issues with your DNA are technically and legally and procedurally solved someday, then they won't be needing to sample you very often. We're a long way from that in this decade.
I kind of doubt how useful genome sequencing will be for basic diagnostic medicine. I'm reminded of a scene in House where they're complaining about having to run a full body scan, because any time you scan anyone, you always find a dozen things "wrong" that require following up on, almost all of which are benign.
As a separate issue, considering the fact that the medical profession still can't decide whether fat is good for you or not, I have very low confidence in most assessment that X gene is linked to X condition.
All that is true, but in real world, knowing you will get ill can (and probably will) make a difference in how you can live your life.
Besides medical related issues, most insurance companies (in my country at least.. but if some tecnology like that pops out, surelly will start to pop out everywhere) require you state all medical conditions prior to the purchase of the insurance. And this insurance are mandatory for all kind of credit.
In the case of my country what they ask is for Known/Diagnosed medical conditions. So, knowing will give them legal basis to... basicaly abuse you. Making you some kind of type B, gattaca style, human being.
"Lack of knowledge is lack of power."
(-1: Post disagrees with my already-settled worldview) is not a valid mod option.
With the shuttering of 23andme.com, forced by the FDA, we no longer have the ability to have our genes sequenced on our own prerogative.
Thanks federal government.
Slashdot's rate-of-post filter: Preventing you from posting too many great ideas at once.
Yeah, this was one of my concerns too - but it would appear with Obamacare no longer allowing charges for preexisting conditions, an increased insurance premium because of DNA screening results isn't CURRENTLY possible. In general, my philosophy is that it should be possible for people to opt out of ALL data collection. Not merely disclosure, but collection. An infinitely large database of information has an infinitely large possibility of abuse. It should be possible for people to opt out of electronic health records, also - or at least have a user controlled kill switch to permanently erase their EHR.