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Should Patients Have the Option To Not Know Their DNA?

Soulskill posted about 8 months ago | from the only-tell-me-what-i-secretly-want-to-know dept.

Biotech 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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Op Out Knowledge? (4, Insightful)

wisnoskij (1206448) | about 8 months ago | (#46636513)

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.

Re:Op Out Knowledge? (2, Insightful)

rtb61 (674572) | about 8 months ago | (#46636605)

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.

Re:Op Out Knowledge? (3, Interesting)

Luckyo (1726890) | about 8 months ago | (#46636851)

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.

Re:Op Out Knowledge? (1)

noh8rz10 (2716597) | about 8 months ago | (#46636869)

that would be awesome, organ donor bounty hunters.

Re:Op Out Knowledge? (0)

Anonymous Coward | about 8 months ago | (#46637131)

that would be awesome, organ donor bounty hunters.

Does this [youtube.com] count towards rule 34 in this case?

Re:Op Out Knowledge? (2)

pepty (1976012) | about 8 months ago | (#46637027)

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.

Re:Op Out Knowledge? (2)

sg_oneill (159032) | about 8 months ago | (#46637185)

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.

Sounds like security through obscurity. (2)

StormRider01 (231428) | about 8 months ago | (#46636627)

Works ever time, right?

Sounds like derp. (2, Insightful)

Anonymous Coward | about 8 months ago | (#46636749)

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.

Re:Sounds like derp. (0)

Cenan (1892902) | about 8 months ago | (#46636877)

Obscurity is a valid layer

No.

Re:Sounds like derp. (0)

Anonymous Coward | about 8 months ago | (#46636895)

Obscurity is a valid layer

No.

Feel free to post your opinion on what is a valid form of security then. I'm sure you think you can find something that isn't based on obscurity.

Re:Sounds like derp. (4, Informative)

hazem (472289) | about 8 months ago | (#46637133)

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? (4, Funny)

TheRecklessWanderer (929556) | about 8 months ago | (#46636693)

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

Re:Op Out Knowledge? (1, Insightful)

Krishnoid (984597) | about 8 months ago | (#46636695)

I do not think there is a single law on the books that makes it illegal not to know something.

I'm sorry, but ignorance of that law is not an excuse [wikipedia.org] .

Re:Op Out Knowledge? (1)

artor3 (1344997) | about 8 months ago | (#46637111)

That's not the same thing. Not knowing a law doesn't excuse you from breaking it, but not knowing a law is not in-and-of-itself a crime.

Unfortunately, there are cases in the United States where a person cannot opt out of medical knowledge. Several anti-abortion measures spring to mind.

Re:Op Out Knowledge? (0)

Maelwryth (982896) | about 8 months ago | (#46636801)

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.

Not knowing the law is no excuse for breaking it.

Re:Op Out Knowledge? (1)

mrbester (200927) | about 8 months ago | (#46636901)

Given the amount of laws on the books you've probably broken three of them without knowing it just by making that post. But that's OK, apparently.

"Ignorance of the law is not an excuse" is an excuse in itself used to oppress as the assumption is made that you *did* know a certain action was illegal, did it anyway and feigned ignorance. In other words, you're a liar too. Just for that you can have another six months in chokey.

Re:Op Out Knowledge? (1)

HuguesT (84078) | about 8 months ago | (#46636829)

Amazingly, it is illegal not to know the law. More specifically, not knowing the law is never a defense.

Re:Op Out Knowledge? (1)

geekoid (135745) | about 8 months ago | (#46637039)

Although in many cases, it should be.

Re:Op Out Knowledge? (1)

polar red (215081) | about 8 months ago | (#46637109)

So not knowing murder is illegal allows you to murder?

Re:Op Out Knowledge? (1)

Neil Boekend (1854906) | about 8 months ago | (#46637203)

In case of some weird and exotic laws not knowing it should exempt you:
It is illegal to play dominoes on Sunday. [tripod.com]
Disclaimer: Dunno if that list is correct, but it is at least somewhat funny.

Re:Op Out Knowledge? (2)

bickerdyke (670000) | about 8 months ago | (#46637083)

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.

Re:Op Out Knowledge? (1)

Big Hairy Ian (1155547) | about 8 months ago | (#46637285)

Wow is there an echo in here?

Re:Op Out Knowledge? (1)

wonkey_monkey (2592601) | about 8 months ago | (#46637369)

Amazingly, it is illegal not to know the law.

No it's not. The former statement does not logically follow from the latter.

Re:Op Out Knowledge? (2)

Cenan (1892902) | about 8 months ago | (#46636893)

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.

Re:Op Out Knowledge? (2)

cstacy (534252) | about 8 months ago | (#46637043)

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.

Re:Op Out Knowledge? (1)

Neil Boekend (1854906) | about 8 months ago | (#46637249)

The DNA check should be used as a crosscheck. If symptom gene 127891 is present then the chance that symptom AHKS is a serious heart condition is big. If it isn't present then it's probably just a rash.
If your doctor has a list of increased chances based on your DNA then that helps to diagnose quicker and better.
Not everyone can handle such information. It is a big step to stop worrying about a future disease and have fun with life. Anecdotal evidence suggest that many people can't take such a step.

Personally, I can handle the information on that list. My kidneys have been degrading since I was born so I am accustomed to having such information. I took that step a long time ago and it seems to me that it is easier when you grow up with it. Most people don't have such experience.

Re:Op Out Knowledge? (1)

RDW (41497) | about 8 months ago | (#46637265)

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.

What if there is no effective treatment? James Watson, co-discoverer of the DNA structure and one of the first people to have his entire genome sequenced, chose not to know the sequence of his APOE gene, some variants of which have been linked to an increased risk of late onset Alzheimer's disease.

Re:Op Out Knowledge? (1)

Cenan (1892902) | about 8 months ago | (#46637339)

I don't see the lack of a treatment as an argument for not knowing, but I do get why some might not wish to know in that instance. My problem is with the general sentiment that it is ok to stick your head in the sand. The problem does not go away by doing that. And in the case I have a terminal incurable illness, I'd like to know so that I can make the most of my time left, and make sure that the people closest to me won't suffer needlessly because of my ignorance.

Because the choice is not always yours alone. What about your wife? Should she have to deal with the consequences of your head-in-the-sand approach when you develop Alzheimer's? When the time could have been used to set her up properly, it was instead used dicking about and suddenly you're all out of choices, and so is she.

Re:Op Out Knowledge? (5, Insightful)

RDW (41497) | about 8 months ago | (#46637479)

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.

Re:Op Out Knowledge? (2)

Kjella (173770) | about 8 months ago | (#46637385)

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.

Re:Op Out Knowledge? (1)

PolygamousRanchKid (1290638) | about 8 months ago | (#46636961)

I do not think there is a single law on the books that makes it illegal not to know something.

If there was, most of the kids that I went to school with would be in jail. They had shit for brains. The poor teachers were fighting a lost cause trying to teach that lot.

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.

No known force in the universe seems to be able to get some kids to do their homework.

So even if doctors were force to tell potential diabetics that they will develop the disease if they keep quaffing sugary drinks . . . a lot of folks will opt out in their own head anyway. Simply because they don't want to hear what a doctors is telling them.

Re:Op Out Knowledge? (1)

geekoid (135745) | about 8 months ago | (#46637031)

Kids like that need different types of teaching.

"So even if doctors were force to tell potential diabetics that they will develop the disease if they keep quaffing sugary drinks "
is there a Dr. that doesn't say that now?
If you are drinking sugary drinks, you potential have diabetes.

Re:Op Out Knowledge? (1)

DarkOx (621550) | about 8 months ago | (#46637559)

Interesting thought, what if we rested people for ignorance and sentenced them to school.

RE: Op Out Knowledge? (0)

Anonymous Coward | about 8 months ago | (#46636977)

I don't know about you, but where I live, we have signs up that say that it is illegal to not read and obey roadside signs. That takes it from being illegal to break the law to being illegal to simply be ignorant of the law. Pretty slippery slope business if you ask me.

Re:Op Out Knowledge? (1)

geekoid (135745) | about 8 months ago | (#46637051)

No knowledge is opt out able. How do you opt out of something you already know?

Gaining the knowledge can be.

Re:Op Out Knowledge? (0)

Anonymous Coward | about 8 months ago | (#46637121)

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.

Umm..Not so much [wikipedia.org] .

Posting anon to preserve mods on this page.

Re:Op Out Knowledge? (0)

Ubi_NL (313657) | about 8 months ago | (#46637255)

It is illegal not to know the law. In better phrasing: not knowing the law is not an excuse when you break the law.

Re:Op Out Knowledge? (1)

wonkey_monkey (2592601) | about 8 months ago | (#46637377)

Like several previous posters, your second statement doesn't logically follow from the first.

It's illegal to break the law in question; it's not illegal not to know that it's against in the law in the first place. It's just that you can't use it as a defence.

Re:Op Out Knowledge? (0)

Anonymous Coward | about 8 months ago | (#46637401)

But the larger question, is can we prevent the insurance industry from collecting our personal information in this manner?
That's when we would need an "illegal to know something" law, to protect us from being treated as 3rd rate humans simply because of a correlation or statistic that indicates that we "might" be more prone to a particular illness than other candidates. Candidates for jobs, insurance, partnerships, assignments, missions, medical treatments, for many things that we assume "equal access" at the moment.
So, sorry, you're wrong, someone IS going to force us all and everyone else to know things about us.
Do you really want that?
If not, you have to act BEFORE the facts make any such law redundant and useless because such facts and tests have already been performed and rendered public. You could be denied a preventative operation, or reprioritised out of range, because some insurance company thinks you're more likely to die than some other punter, based on your grandparents historical data. Which could easily be WRONG, and then you be royally screwed.

Re:Op Out Knowledge? (1)

ModernGeek (601932) | about 8 months ago | (#46637723)

Say that to any child currently attending a state-mandated educational institution.

Re:Op Out Knowledge? (1)

Jim Sadler (3430529) | about 8 months ago | (#46637855)

Oh there are such laws. The feds and some states no longer allow willful ignorance as a legal defense. In other words if you drive a truck and the back of the truck is swimming in large amounts of dope you can go to prison even though you never looked in the trunk or heard tell that there was a load of dope in the truck. The idea that a reasonable person would at least eyeball a load to see if any obvious contraband was on board. This is sort of new as in years gone by as long as no proof showed that you knew there was dope you could not be convicted. Doctors do have to guess at which patients will be destroyed by bad news. Sometimes they ask a relative whether the patient should be informed or not. Some people really do not believe that all people die and the idea that they will actually die is not part of their beliefs. Other people are very aware that death is always at our door and that their day will come. That is not depressing in itself as death does tend to stop all suffering and regrets. To some folks coming to a dead stop (pun intended) is heaven in itself.

Re:Op Out Knowledge? (1)

wisnoskij (1206448) | about 8 months ago | (#46637943)

You are legally allowed to not familiarize yourself with laws, and it is never illegal not to ask questions ("Can you bring this generic package over the boarder for me? Sure, why not", is legal). You are not not protected from the consequences of your ignorance.

yeeehaw (1)

Sigvatr (1207234) | about 8 months ago | (#46636517)

get that dang ol guvment out of my genomes thanks obama

Re:yeeehaw (1)

tapspace (2368622) | about 8 months ago | (#46636853)

Heh. With the pace we're on, whether or not you have access to your DNA information and whether or not it's in your medical history, it will be in a database with essentially unfettered access by the NSA, FBI, TSA, ATF, CIA and probably the local police should their buddy the 5 term, hard-on-crime judge agree.

Re:yeeehaw (1)

tapspace (2368622) | about 8 months ago | (#46636855)

Shit. I totally whiffed on DEA!

Re:yeeehaw (1)

noh8rz10 (2716597) | about 8 months ago | (#46636879)

also, goog will run ads against it.

Re:yeeehaw (1)

geekoid (135745) | about 8 months ago | (#46637033)

IF there were strictly enforced laws on how they use that data, would that be bad?

Hypothetically speaking.

Ignorance is bliss (1)

Anonymous Coward | about 8 months ago | (#46636523)

I guess society is yet to put a version of that in law. This is the beginning of the end.

Re:Ignorance is bliss (1)

khallow (566160) | about 8 months ago | (#46636547)

It's been a problem as long as humans have been around. Just because someone can learn knowledge doesn't mean that they will do so. Just remember the saying about leading a horse to water.

No (0)

rsilvergun (571051) | about 8 months ago | (#46636533)

We should have socialized medicine so people can actually get treatment. Use the money you save putting the insurance industry out of work to pay for it.

Re:No (1)

CheezburgerBrown . (3417019) | about 8 months ago | (#46636565)

I'm not a big proponent of socialism, but Healthcare is an area that I am open to any system that works. Especially if it includes fucking over the insurance industry.

Re:No (1)

pepty (1976012) | about 8 months ago | (#46637069)

The only way for that to work:

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.

Should know ! (3, Insightful)

invictusvoyd (3546069) | about 8 months ago | (#46636541)

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

Kill Switch (-1)

Anonymous Coward | about 8 months ago | (#46636557)

All parents have the option to kill and eat their babies as they wish.

The Kill Switch.

Genomic Medicine will probably be required (3, Insightful)

mtippett (110279) | about 8 months ago | (#46636569)

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.

Re:Genomic Medicine will probably be required (2)

pepty (1976012) | about 8 months ago | (#46637015)

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

No, you don't need my DNA (0)

Anonymous Coward | about 8 months ago | (#46636573)

I'd rather you have to test me every single damn time at a horrendous expense and waste of money and time then store my DNA in electronic format.

opt-out (1)

LookIntoTheFuture (3480731) | about 8 months ago | (#46636581)

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.

Risk (0)

Anonymous Coward | about 8 months ago | (#46636585)

Increased risk is only an indicator of what may happen and may not represent what eventuates. Why bother with this information if its only a possibility.

Can you sue if they get it wrong and you spend your life in fear of a disease that never comes?

Re:Risk (1)

flaming error (1041742) | about 8 months ago | (#46636793)

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?

Knowledge is Power (4, Insightful)

Rollgunner (630808) | about 8 months ago | (#46636587)

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".

Re:Knowledge is Power (0)

Anonymous Coward | about 8 months ago | (#46636615)

They don't know anything like that. Less than 10% of the gene association studies you hear about are ever replicated. Its like in gattaca where "everyone" had a heart problem, its just more BS fake science.

Re:Knowledge is Power (3, Informative)

Anonymous Coward | about 8 months ago | (#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:Knowledge is Power (2)

stoploss (2842505) | about 8 months ago | (#46636745)

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.

Re:Knowledge is Power (1)

pepty (1976012) | about 8 months ago | (#46637115)

On the cancer end, BRCA genetic testing can inform decisions likely to considerably lengthen some womens' lives. A bigger impact (or rather, an impact on more people) will come about as biopsy samples are submitted for genetic and gene expression level testing: cancerous cells accumulate lots of mutations, some of which contribute to malignancy. Knowing what those mutations are will help cut down on false positives/false negatives, as well as guide treatment decisions.

Re:Knowledge is Power (1)

zyzko (6739) | about 8 months ago | (#46637499)

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.

On the other hand - in case of Huntington's there is a 50/50 chance of your children inheriting it from you if you have it. So it can be argued that is it not ethical to test yourself if one of your parents has it in case you are planning to have kids?

I can understand some people do not want to know and still have kids and are ok with that, however I would not be in the case of Huntington's specifically (no cure, very, very nasty disease - although depending on the repetition count of the gene pattern that causes the disease the age and severity of when the disease manifests itself vary).

Who Would (or Wouldn't) Want to Know? (1)

mckellar75238 (1218210) | about 8 months ago | (#46636665)

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.

Re:Who Would (or Wouldn't) Want to Know? (1)

Neil Boekend (1854906) | about 8 months ago | (#46637271)

Your doctor doesn't tell your insurance agency anything beyond "He had a consult, it costs $X. Pay up."
If he tells the insurance agency anything else, he is liable for a whole mess of lawsuits in most countries, including I believe the USA and definitely the Netherlands.

Re:Who Would (or Wouldn't) Want to Know? (1)

cstacy (534252) | about 8 months ago | (#46637807)

Your doctor doesn't tell your insurance agency anything beyond "He had a consult, it costs $X. Pay up."
If he tells the insurance agency anything else, he is liable for a whole mess of lawsuits

The insurance company receives every detail of every procedure and every prescription that you have (as well as how often you fill it, whether you do so at the appropriate intervals, etc.) There is a lot more detail than "a consult". The insurance company then uses sophisticated AI programs to guess (when it isn't already spelled out) what's wrong with you, and what might go wrong with you in the future. They know a lot more than you seem to think. They read and process tremendous amounts of this information in near real-time. They use this knowledge for a variety of purposes. At least, that's what happens in the USA.

Guess how I know. Hint: I can't tell you any details due to NDA.

Re:Who Would (or Wouldn't) Want to Know? (0)

Anonymous Coward | about 8 months ago | (#46637923)

I can't tell you any details due to NDA.

ORLY?

The insurance company receives every detail of every procedure and every prescription that you have (as well as how often you fill it, whether you do so at the appropriate intervals, etc.) There is a lot more detail than "a consult". The insurance company then uses sophisticated AI programs to guess (when it isn't already spelled out) what's wrong with you, and what might go wrong with you in the future. They know a lot more than you seem to think. They read and process tremendous amounts of this information in near real-time. They use this knowledge for a variety of purposes. At least, that's what happens in the USA.

I think you and the insurance company may not agree on what a "detail" is.

Gattaca (1)

gmhowell (26755) | about 8 months ago | (#46636667)

It certainly would have made Gattaca a shorter movie.

Re:Gattaca (1)

geekoid (135745) | about 8 months ago | (#46637009)

I think it would have just underscored the bigotry and intolerance.
I still wonder what the long term viability for those companies are. I mean, after a couple generations 99% of issues will have been removed from the gene pool.
On the plus side I suspect intelligence will be chosen, so after a coupe of generation off 200 IQ. they may figure it out.

Re:Gattaca (1)

gmhowell (26755) | about 8 months ago | (#46637189)

Given the choice between intelligence and football playing ability (American in the US, soccer elsewhere) I know which I'd bet on the bulk of humanity to choose for.

Simple solution (1)

Anonymous Coward | about 8 months ago | (#46636701)

If you don't care about your health, just don't go to the doctor.

Because Spoilers (1)

infogulch (1838658) | about 8 months ago | (#46636779)

Some people HATE spoilers.

Expanded Summary (0)

Anonymous Coward | about 8 months ago | (#46636827)

First, the summary is wrong in that DNA testing doesn't tell you what's wrong with you. If you have a cold, DNA testing won't tell you that.

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?

Here's two important bits the summary left out:

The new recommendation amends earlier guidelines that called for doctors to screen for genes linked to 24 medical conditions, even if they are irrelevant to the ailment the patient is being tested for.

So testing was actually required before and now it's optional. I think that's good. Here's their counter argument:

Some doctors oppose the decision since they feel it will make it too easy to refuse potentially life-saving testing. “I worry that allowing this opt out will disproportionately impact the disenfranchised. It will become too easy for a lazy doctor just to say ‘ok, we’ll skip [this important testing],” says Robert Green, an associate professor of medicine at Harvard Medical School and a lead writer of the original ACMG recommendations. “Frightened patients, those less well-educated patients or perhaps those distracted by a child’s disease will be the ones that opt out,” he says.

Now you don't need to read the article (but it's not broken up onto multiple pages, so you might want to trigger a page hit as a way to say thanks).

Re:Expanded Summary (1)

pepty (1976012) | about 8 months ago | (#46637159)

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.

Re:Expanded Summary (1)

cstacy (534252) | about 8 months ago | (#46637837)

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.

Bad idea (0)

Anonymous Coward | about 8 months ago | (#46636833)

Health insurance providers are going to fucking love this.

Re:Bad idea (1)

Luckyo (1726890) | about 8 months ago | (#46636859)

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.

Re:Bad idea (1)

geekoid (135745) | about 8 months ago | (#46636993)

Yep.
Then finally we can have a decent health system.

Other similar situations (1)

Spiked_Three (626260) | about 8 months ago | (#46636979)

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.

Re:Other similar situations (2)

RDW (41497) | about 8 months ago | (#46637207)

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.

Re:Other similar situations (0)

Anonymous Coward | about 8 months ago | (#46637299)

That sounds retarded. The gene is on the Y chromosome correct? What percent of murderers and rapists are male. I would bet close to 90 and 99%. Is this a real thing or a joke?

Re:Other similar situations (0)

Anonymous Coward | about 8 months ago | (#46637743)

99.9999999999999999% of criminals have eaten bread.

Bread has been linked with aggressive behavior, autism, obesity, a preference for large, fast cars, a preference for minivans, and a preference for four door familymobiles.

if the patient (1)

geekoid (135745) | about 8 months ago | (#46636989)

want's to remain ignorant, fine but the info should still be collected. It will be too valuable a tool.

Completely at the patients' discretion (1)

Misagon (1135) | about 8 months ago | (#46637049)

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.

What's more important: (1)

bickerdyke (670000) | about 8 months ago | (#46637097)

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.

News at 11 (1)

KeensMustard (655606) | about 8 months ago | (#46637181)

People opt out of information all the time, including times when knowing something might objectively be helpful, but deliberate ignorance leads to a sense of comfort. Denial.

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.

Hey, whats that rash? (1)

YoungManKlaus (2773165) | about 8 months ago | (#46637187)

better make a genome-test to find out!

insurance issue (1)

robertc99 (1366201) | about 8 months ago | (#46637211)

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.

Re:insurance issue (1)

frnic (98517) | about 8 months ago | (#46637745)

This is not a problem with DNA testing, this is a problem with the insurance companies, which need to be done away with. They bring NOTHING to the game when it comes to healthcare delivery and add a significant cost, as these concerns show, they often inhibit healthcare delivery. The answer to that is simply universal single payer healthcare.

Self responsibility and common sense is in need (0)

Anonymous Coward | about 8 months ago | (#46637361)

Let truth prevail. That should be medicine to all problems.

If DNA information about a person shows he is having some weakness, then there are surely millions who are weaker like him. Medicine companies can directly reach those guys cheap. Public elected Govts. should show some spine and create well monitored regulatory mechanisms to protect public interests than corporate interests. They should introspect why public does not trust them and public should introspect whom they are electing.

But the insurance companies should be forbidden... (1)

Anonymous Coward | about 8 months ago | (#46637481)

... from ever seeing your genetic tests.

Non-issue (0)

Anonymous Coward | about 8 months ago | (#46637511)

The way that clinical genomic/exomic sequencing is performed now is that a specific list of genes are chosen for a analysis before the analysis is performed. Mutations in other genes, that could well impact the health of the patient, are simply not reported to the clinician or even analysed. If a cancer specialist orders a patient's DNA to be sequenced for specific mutations that would guide the best choice of treatment for, say, lung cancer, how would this clinician deal with a report that included details of mutations that predispose the patient to, say, Parkison's disease? A disease clearly outside the clinician's area of expertise. The simple answer is that they could not. As such, clinical sequencing is performed for specific sets of genes relevant to a diagnosing a specific disease or disorder or choosing the best treatment. All other data is discarded. So what about a doctor's duty of care? Shouldn't they look at everything in the sequencing data? The answer, given to me by a clinical pathologist, is 'no', as this is not currently the case with standard tests based on older technologies: a blood sample sitting in a pathologist's fridge could very well be tested for every disease under the sun, not just what the doctor ordered, but this is simply not done.

One day, we may well all have our genomes sequenced at birth and every gene will be analysed to see which conditions were are predisposed to. But this widely-roaming analysis is not what is currently done and would first require tackling very big issues such as data storage and privacy. So, currently, incidental findings are not an issue, simply because they are not even observed.

stress-related illness (1)

lkcl (517947) | about 8 months ago | (#46637525)

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.

The solution is software (1)

louic (1841824) | about 8 months ago | (#46637811)

1. Sequence everything
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 /certain/ question. So answer this specific question only but keep the data to answer potential other questions later.

Just Like the MDs (0)

Anonymous Coward | about 8 months ago | (#46637885)

MDs have demanded they only be told the results of the tests they request from blood samples, while the machines test each sample for all constituents. The results are masked at printout. This willful ignorance is a result of medical lawsuits, the MDs don't want to be shown results that might point out a flaw in the diagnosis.

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