Adding Your DNA To A Biobank Is A Noble Move — But Is It A Wise One?
from the no-good-deed-goes-unpunished dept
One new approach to teasing apart the complex relationships between genes and common diseases such as cancer, heart disease, asthma and diabetes is by creating huge biobanks of medical data and samples. The idea is that by tracking the health and habits of very large populations across many years, and then examining their DNA, it will be possible to spot factors in common. Here’s a major biobank that is shortly opening up its holdings for research:
UK Biobank recruited 500,000 people aged between 40-69 years in 2006-2010 from across the country to take part in this project. They have undergone measures, provided blood, urine and saliva samples for future analysis, detailed information about themselves and agreed to have their health followed. Over many years this will build into a powerful resource to help scientists discover why some people develop particular diseases and others do not.
Anything that brings us closer to understanding and treating diseases that affect hundreds of millions of people is obviously to be welcomed. But DNA is special: for a start, it is unique for each of us (even “identical” twins seem to have different DNA.) This has made DNA of particular interest to the police, since it appears to offer a perfect way for identifying those at a crime scene (not necessarily the perpetrators, of course.) Which raises the question: what happens when the police realize that biobanks offer a great way to get DNA they can’t obtain in the usual ways?
The UK Biobank addresses this issue in its FAQ:
Will access be allowed for purposes other than health-related research?
The UK Biobank Resource has been established for health-related research that is in the public interest. Any attempts to use it for other purposes will be resisted. So, for example, insurance companies and employers will not be allowed to access the Resource to look at information, samples or test results for any identifiable participants. Nor will UK Biobank allow access by the police, security services or other law enforcement agencies, unless it is forced to do so by the courts.
Clearly the UK Biobank wants to do the right thing here, but that last phrase “unless it is forced to do so by the courts” means that the police will probably get what they want once they start invoking “terrorism” or asking us to think of the children.
And once they have a sample, they might well decide to sequence its DNA to help identify the likely hair, eye and skin color of the person concerned – and perhaps much else besides, as gene analysis techniques advance, including highly-sensitive areas such as mental and reproductive health.
Investing your DNA in a biobank might seem like a noble act today, but who knows what the payback will be in years to come?
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Comments on “Adding Your DNA To A Biobank Is A Noble Move — But Is It A Wise One?”
I do like the scientific/full explanation they have given.
In fairness to them, if the courts rule that access should be granted, they really wouldn’t have a choice.
I don’t think the problem is the, fundamentally beneficial, biobank is the problem here.
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Pro for having an account: this would let you edit your comments and prevent you looking like an illiterate slob.
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Did you just insult yourself by calling yourself an illiterate slob?
And no, you can’t edit comments on Techdirt at all, even with an account.
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Probably, but he could be on the same proxy(NAT or otherwise) the other guy so that may be difficult to say with certainty.
But is still funny.
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That’s why there are 2 (two) buttons at the bottom of the window that you type your comment in: ‘Submit’ and ‘Preview’.
Protip: you can hit the ‘Preview’ button after each of your edits until you get it right. 😉
Re: Re: Re:2 Re:
Comment was directed at the AC above.
No offense intended, Rikuo.
Re: Re: Re:2 Re:
…hey there is a preview button =D.
Actually posting for this extra bit:
Another worry is profiling people based on their DNA and responding in weird ways like:
From pharmaceutical companies sending you ads based on possible medical conditions to being asked to attend “Anger Management” sessions because of possible tendency towards a short temper.
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…it’s ok if I do it. Though i feel better that no-one can edit their comments.
Back on topic:
These kind of scientific/technological advances shouldn’t be being held back by making people worried that their details could be misused by other parties.
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They shouldn’t, but there’s no way in hell I would volunteer my DNA for just that reason.
DNA RNA
I do not mind genetic samples used in scientific or medical research.
My problem is I could not ever trust anyone with such unique data on me. God only help us if Governments, Police and Businesses know your genetic profile.
Re: DNA RNA
Why can’t they anonymise the data so that law enforcement can’t get anything valuable since it won’t be there?
Re: Re: DNA RNA
(a) Anonymizing data is not a solved problem in computing.
and
(b) It’s not clear that this data can be anonymized.
Re: Re: DNA RNA
Because you need to follow their lifestyle, health/fitness, eating habits, injuries, get samples, run tests so you can cross-reference/eliminate/factor in a load of stuff to find out a load of other stuff.
(Preview……and submit 😉 )
Re: DNA RNA
you ‘trust’ your Government to hold highly detailed records of your financial activities, your travel activities, your living arraingements, the things you own, the licenses you hold.. your internet activity, your phone calls, your text messages.
as well as detailed records of any crimes or ‘incidents’ you have had with authorities.
They even record your car plates as you pass certain parts of the road, or when you drive past a police car, making a record of where and when you were at a specific location.
And guess what, WHO cares ? again you dont care if you have not done anything wrong that would attract the attention of law enforcement, would you ?
I guess if every criminal in the US just left behind a copy of their social security number there would be little problems..
or if every human looked exactly the same !!! but they dont, there are many unique differentiators among people, (sex, age, look, height, weight, location and so on).
God only help us if Governments, Police and Businesses know your genetic profile.
Why, what is the reason or logic that supports your statement ?
What is God going to do ? and which God do you refer too ?
Allah ? Budda ? Masnick ? Ra ?
Your God will not help you if you have committed a crime, and for that reason you do not want the police to have an easier time in finding you !!!
When you go into a bank to withdraw some of your money do you worry that the security guard is going to rob you ? after all he has a gun !!! and you have money !!
Or do you believe that it is because of God that he does not rob you, but somehow you are less safe from crime if you make the job of fighting crime easier !!!
Would you not do whatever it is necessary to do to stop a serial killer from evading capture, or would you rather let him/her get away with it by not helping the police ???
No wonder your country is going to shit, sorry gone to shit !!
Have not seen much of your “God” helping you either..
Re: Re: DNA RNA
Reverse the question. Why would the Government want unique genetic details about people? Certainly people who have never been arrested or convicted of a crime?
What about if they examine your DNA to conclude you have a 37% chance of being a rapist, 60% chance of being a thief, 98% chance of dead before 40?
How about they calculate you could live beyond 100 and boost your taxes to compensate for your extra long retirement?
All it takes is one tiny strand of DNA. I would not be surprised if they rape your DNA from you at birth.
Re: Re: Re: DNA RNA
Reverse the question. Why would the Government want unique genetic details about people? Certainly people who have never been arrested or convicted of a crime?
Not being arrested of convicted of a crime does not mean you have not committed a crime !
scientists want that genetic information to do research, and to try to understand and learn and do more.
what if your DNA says you have a 40% chance of committing a crime.. it also means you have a 60% chance of not committing a crime..
you do not enforce laws by statistics or chance !!
you watch too many movies…
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“again you dont care if you have not done anything wrong that would attract the attention of law enforcement, would you ?”
Of course I do, as should everyone.
“Teasing apart”?
Or tearing?
Can’t tell if it’s a typo or if it’s just some word usage I’m unfamiliar with.
easy, dont be a criminal and dont worry -
simple answer, DO NOT break the law, and especially in such a way that DNA would need to be used to catch you..
What are you whinning about this time ?
The fact that there are ways to fight crime, sure your not going to like that if crime is your method of existance.
.
The police have requested and received the DNA samples of every male person in an entire town, in order to determine if any one of them was involved in a murder.
So it does not matter at all if you think that not helping research because you are at heart a criminal (and not wanting to be caught for your crimes).
Why are you not trying to promote the law authorities the ability to find criminals quicker, after all unless you are the criminal what do you have to worry about ?
This is the typical attitude of the likes of masnick, dont do anything that promotes compliance with the law.
Make it as hard and as expensive as possible for law enforcement to do their job… that way you can ‘get away’ with more of your own crimes.
What motive, or logic are you using for not allowing law enforcement to use available tools to enforce the law ?
Or just because you sign onto one of these studies, by giving your DNA up, are you somehow implicating yourself ?
I would not care less, if the government had my DNA or not, nor would I care if they wanted to search me or my computer.
It’s called being “law abiding” and therefore not having to worry about my crimes, because I do not do crimes..
how about you masnick ? why would you be concerned ? if law enforcement asked you for a volentary DNA sample to exclude (or include) you in a crime would you refuse ? if so why ?
Re: easy, dont be a criminal and dont worry -
…because as we all know, No one innocent has ever been accused of a crime. Hey, you just solved the whole court system dilemma.
J’accuse!
Burn the witch! Right, who’s next then?
Re: Re: easy, dont be a criminal and dont worry -
Yea, and what is the first thing the police will do after you are ‘picked up’ as a suspect of a crime, where DNA is the evidence ?
Take your DNA possibly ?
and if you DNA does not match the crime scene DNA what happens to you (ie, when it is proven you are innocent)?
and what happens if the DNA you provide to the police matches that of the DNA found at the crime scene ?
what difference does it make to your guilt or otherwise, if you give your DNA or not ?
either you are guilty and trying to avoid being caught or you are innocent and wanting to prove that fact..
you have to think about why you would not be willing to give your DNA ? or why you would want to make the job of catching the guilty more difficult ?
what do you have to hide ? I have been accused of crimes, that I did not do, and when I was, I did everything possible and more to ensure that it was clear I was not the person who committed the crime..
If you were accused of a crime, would you ‘laywer up’ and say nothing, and fight it all the way,, or would you try to prove your innocense ?
Many people have been accused of crimes, and most (not all) have their innocense confirmed. Often by DNA !!!
Re: Re: Re: easy, dont be a criminal and dont worry -
“(ie, when it is proven you are innocent)” Why do I have to be proven innocent? The law here in the USA is Innocent until proven guilty, the burden of proving a suspect’s guilt lies on the police and the prosecutor, not on the citizen being accused. AC, the logic you are using is the same logic as those who are Pro-SOPA/PIPA, “If you are not doing anything wrong you have nothing to worry about, right?” Sorry but that does not fly with me, and from what I have seen with most people here on Techdirt. (and yes, I signed up after a year plus of lurking to comment on a AC’s post, ironic no?)
Re: Re: Re:2 easy, dont be a criminal and dont worry -
ok proven you are ‘not guilty’ happier ?
the onus of proof is on the court’s and police, yes, they have to prove you are guilty, you have to defend your innocence, so you do have to prove or provide proof that you are NOT guilty.
Innocence is an assumption of the Court, it forces the police to provide compelling evidence of your guilt, and a DNA database record in NOT compelling evidence of guilt.
You REAL DNA found at the crime scene MIGHT help to prove your guilt, it might equally prove your innocense.
BTW: if you are allready in court, the police will have taken your DNA and finger prints, and have that on their database.. so either way you are going to give up your DNA record either to prove your innocence or to be found guilty of the crime…
Re: Re: easy, dont be a criminal and dont worry -
because as we all know, No one innocent has ever been accused of a crime. Hey, you just solved the whole court system dilemma.
And how would that work if you had your DNA sample on record ?
the police go the a crime scene they find some DNA, and they do a search of that DNA on a database, they come up with a match (DNA is accurate), that match is not you, (you did not commit the crime), so how, if you are innocent would having your DNA on record make it more possible that you would be wrongly identified as the criminal ?
certainly, if you committed the crime, your attitude about this might be different !!!, if you committed the crime you have NO interest in ensuring the police ‘get’s the right person’, but if you are the victim of a crime again your opinion may be somewhat different !!
Re: Re: Re: easy, dont be a criminal and dont worry -
And the police would NEVER plant or fake evidence. Right? They never do anything wrong that way.
If they have this kind of power they WILL abuse it. It’s not a question of IF it’s a question of WHEN.
Re: Re: Re:2 easy, dont be a criminal and dont worry -
idiot, do you know anything ? Do you think the DNA database is a big room with millions of blood sample ? that the police can enter and take a sample and plant that sample at a crime scene ?
or do you think the DNA database is a computer record containing files of DIGITAL information of the DNA.
Do the police can access this database, synthesize your DNA and plant that DNA at the crime scene ?
Or do they just leave a memory stick at the crime scene with a copy of your DNA RECORD on it and use that as evidence ?
You are a paranoid little ant arn’t you !!!! do you check under your bed for Ruskies every night as well ?
HOw does a police officer get a DNA record from a computer database and ‘plant’ that DNA at the crime scene ?
some of the crap you guys come up with maks me think you have some genetic deficiencies, big ones…
or are you simply just retarded ?
I would like the think what you said is the stupidest thing I have ever heard, but I have read some of your other post and posts from Masnick, so it’s not even close.. but typical… and amusing….
Re: Re: Re: easy, dont be a criminal and dont worry -
Woh! One logical fallacy at a time, please!
DNA is as accurate as they say it is. They could gather DNA evidence from anything. You likely have your DNA embedded in the houses of some of the friends you visit or some of the co-workers you’ve been in the same room with. Investigative work is the only true measure to prove if something is accurate or not.
Your “WE SHOULD JUST GIVE IT ALL AWAY” stance really only makes sense in a society that both knows and sees all that you do. In which case “Innocent before proven guilty” would be a meaningless statement (much like how you already think it is).
Re: easy, dont be a criminal and dont worry -
darryl I believe you are a criminal, you broke the law recently I know that because I am certain you could not fallow all the laws all the time when even judges and lawyers don’t know all of them and don’t even know how they interact with each other.
Re: Re: easy, dont be a criminal and dont worry -
and your point is ?
and how does that point (if you actually made one) relate to having my DNA on record ?
I am not worried that I am going to get ‘busted’ for “J walking” because I have my DNA on record !!!! are you ?
Re: easy, dont be a criminal and dont worry -
“Why are you not trying to promote the law authorities the ability to find criminals quicker, after all unless you are the criminal what do you have to worry about ?”
Because law enforcement agencies (in the US, anyway) have a long and sordid history of abusing the powers they’re given. This isn’t about trying to hamper the police in finding criminals, this is about hampering the police in their abuse of the innocent public.
Re: Re: easy, dont be a criminal and dont worry -
That is an issue for the police and your government, not for the citizens, the citizens vote in a government, and if you are telling the truth, then it is your own dumb, stupid fault for voting in (if you can be bothered to vote at all) a responsible Government..
Remember, your Government is “BY THE PEOPLE”,,, that means YOU CHOOSE your Government, and you are pissed off because you got what you asked for…
As most Americans cant even be bothered to vote, you deserve everything you get.
America is a basket case because of the likes of you, and the rest of the apathetic morons that cannot be bothered to get off your ass and try to improve things.
But you certainly have the ability to whine alot, and cry about the situation you yourself have created.
Why dont you describe one or two examples of abuse you talk about, even one !!! I am not saying it does not happen, I am saying that is no excuse for you to abuse your power, or your rights..
You will also find that having your DNA and having it confirmed that your DNA is not the DNA of the person who committed the crime, takes that power OFF the police, if they do not have that power they cannot abuse it.
whereas without your DNA proof of innocence, it is more possible for abuse and false identification, and false imprisonment.
a great number of people who have been put in prison have been released based on modern day DNA analysis.
REMOVING power from the police, a power if they do not have they cannot abuse.
The police also do not convict people, they actually have little power, all they can do is tell the court system what they have discovered, and it is the court system that applies the law.
You dont go to jail because a police officer has convicted you, you go to jail because the court and judge has judged the available evidence and determined your guild (with the help of a jury)… the police just find you, and gather the evidence to try to prove your guilt or not.. apart from that they have no power to convict someone.. that is the job of your court/legal system.
Police are not judges or juries, they are police, they are also bound by specific laws and strict rules, and have to ensure probaty of evidence, and prove their case to the prosecutor and the court and justice system…….
Re: Re: Re: easy, dont be a criminal and dont worry -
Wow, you seem to be suffering some kind of delusion that you know anything about me, including my voting history, not to mention a fundamental lack of understanding of how things work in the US and the limits of police power. Perhaps you should see somebody about that.
Re: easy, dont be a criminal and dont worry -
You can’t live in society as it exists today without at least breaking one law. Even when you get in your car to go someplace you have likely broken one or two obscure laws that you aren’t even aware exists.
Think about that next time you try to pull the “WELL THIS ONLY HURTS CRIMINALS AND IM NOTTA CRIMINAL LOL” argument.
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and that obscure laws requires your DNA to catch you, so if you do not walk in front of your car waving a red flag in the US, the police will take a DNA from your car’s stearing wheel and bust you ???
How is having your DNA on record make the police enforce laws that they do not bother to enforce now, with or without DNA ?
DO you think if you are pulled over for speeding, the police will have to take your DNA as well as your license details ?
Following your logic, you would refuse to get a drivers license because it would allow that ‘authorities’ to identify you if you are pulled over for breaking a law ?
There are some real idiots here, people who seem to have lost the ability of thought !!! and reason…
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ofcourse people break laws alot of the time, I might “J walk” today when I am crossing the street, or I might let my dog off it’s lead in the local park, even though it is not a park designated for that purpose !!!.
and the police are going to use my DNA for catch me for that ?
I was riding my push bike the other day, I did not realise that I was not wearing my helmet !!! it was in my backpack, A police car pulled me over !!!!! guess what ?? they did not take my DNA, they did not arrest me, they did not imprison me, he wanted to see that I had an ID card, but he was not interested in the details of my ID, just that I had one.
He said I should pay more attention and make sure I wear my helmet, and we both went on our seperate ways..
Yes, people break laws all the time, but there is a huge difference between not wearing a bike helmet and rape or murder or other crimes that would and are helped by the study and collection of DNA.
If that police officer had of pulled me over, and said they were investigating a series of murders, and they believe the murderer looks similar to me, and would I be willing to give a sample of my DNA to include/exclude me from their investigation, I would happily give them a sample of my DNA.
you can live in a society without breaking major laws, and you can spend your entire life in that state. I have never broken a law that would or could result in going to prison with or without the authorities having my DNA. or my identity or my address, my age, sex, race..
Re: easy, dont be a criminal and dont worry -
“simple answer, DO NOT break the law…”.
“Well, THAT’S a bore!” -Rebecca in “Tank Girl”
be a criminal
It must be nice to live in a bubble where you think that laws will never affect you, no matter how poorly abused, no matter how twisted, and no matter which government is in power at the time.
It must be nice to be immune from the power of international corporations, banks and police agencies that have no obligation to respect your rights as a citizen of whatever magical land you are living in.
For me? I’ll take the safer route and keep the most personal information about myself out of the hands of corrupt police, corrupt government, corrupt business and anybody else who could stand to profit from it.
Of course, if I ever did commit a heinous crime, I would be brought to justice. If I ever had a joint and some potassium nitrate in my car for whatever reason, I could be held in gitmo indefinately without trial. Yep, seems fair.
/end rant
The future is now
“Investing your DNA in a biobank might seem like a noble act today, but who knows what the payback will be in years to come? “
I’d do it for the increased chance of being cloned! Look out world.
This may not be a popular post as hard truths are often hard to swallow.
Looking at the world population growth, and the growth of the cost of medical care, two thoughts hit me. Why are we looking for more and more expensive ways to help people get older, and didn’t Mother Nature design various illnesses to help control the population? Isn’t a longer life expectancy truly silly in the face of the population explosion?
More and more we hear about food shortages, and many cries of ‘Oh Noes’ we have to save the starving children! More and more we hear about the hight cost of health care causing major economic issues, yet we continue to make it more and more expensive, and often with the goal of longer life, instead of just shorter term amelioration of pain and suffering.
I am not suggesting that health care should not work to ease pain and suffering, but what are the long term effects of health care working only to extend life expectancy? What are we going to do when the whole world is in food crisis mode, and only the rich can afford food? I do not pretend to have an answer. I do think that the potential harms from such research are hugely greater than any possible benefit.
You can save your god arguments, your god may not be my god, and your god certainly isn’t everybody’s god, so just save your typing skills, Gods do not have a horse in this race (discussion).
Then of course there is the inherent privacy issues mentioned above. Who will benefit from this reduced privacy? The government and corporations, that’s who. Probably not the individuals participating because the development times for anything useful will likely be longer than the participants could hope for. Do it for the next generation? Reread the first four paragraphs of this post.
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well stand by your words, moron, and kill yourself, do us all a favour.
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Umm, what are you talking about? Stand by what words? Do you deny population growth? Do you deny the increase in medical costs? Do you deny the impracticality of medical research that will exacerbate the population issue? Do you deny the impact of one on the other?
Or are you just a fundamentalist that cannot abide by someone not submitting you YOUR god?
Just what are you talking about, before I think about actually taking your advise?
Thought about it, and no thanks.
Glynn,
Do you see the parallels between this and digital music? You encourage artists to share their music digitally but they are reluctant because of piracy. Piracy is a leach upon potential earnings – yes I understand that many of the pirates would not have purchased the song legitimately, but SOME of the pirates WOULD have if it were not available illegally.
This scientific project is very similar in the fact that there is a legitimate concern, but does the rewards for society out-weigh the risks? Firstly, if you aren’t a criminal why would you be concerned with the police having access to the DNA? Secondly, any search warrant would be limited in scope to a match of a sample – the courts wouldn’t allow complete access to the entire catalog because if they did it would invalidate all DNA evidence from that point forward. A defense attorney would be able to rightfully claim, that the DNA evidence could have been planted because the database was available to the police.
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There are many ethnic groups that are nearly extinct/no longer exist because they used the exact same line of reasoning regarding what kind of information their government should have.
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so you think if you are a jew you have a different DNA than someone else ?
“ethnic group” is NOT individual DNA for a SPECIFIC person, do you think “american’s” have a different DNA to someone from Russia ?
Do you think the Hootoo’s have a different DNA to the Tootsies in Rwanda ?
and again, what does that have to do with an INDIVIDUAL’s DNA?
Name some ethnic groups that are “nearly extinct/no longer exist” due to some Government action?
You say there are many, but I note you do not actually back up your bullshit with anything like a FACT !!!!!..
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“Secondly, any search warrant would be limited in scope to a match of a sample – the courts wouldn’t allow complete access to the entire catalog”
I dont know if I should say aww that is so cute you think that, or fall out of my chair laughing.
After that you just fall apart.
in years to come?
Meh. They will just start taking it at birth.