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California Considers DNA Privacy Law

timothy posted more than 2 years ago | from the keep-your-information-under-wraps dept.

Biotech 119

ananyo writes "California lawmakers are weighing a bill aimed at protecting their state's citizens from surreptitious genetic testing but scientists are voicing their growing concerns that, if passed, such a law would have a costly and damaging effect on research. The bill, dubbed the Genetic Information Privacy Act, would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic information—including DNA, genetic test results, and even family disease history. The University of California has submitted a formal letter objecting to the bill, estimating that the measure could increase administrative costs by up to $594,000 annually — money which would come out of the cash-strapped state's General Fund. The university has also expressed concern that its researchers would suffer competitive losses in obtaining research grants."

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Hard to Swallow (5, Funny)

lewko (195646) | more than 2 years ago | (#40054883)

The bill, dubbed the Genetic Information Privacy Act, would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic information

This just made sex a whole lot more complicated.

Re:Hard to Swallow (1)

Anonymous Coward | more than 2 years ago | (#40054913)

And we won't be able to test for conditions like this. [youtube.com]

Re:Hard to Swallow (2)

santax (1541065) | more than 2 years ago | (#40054949)

Since both you and I are posting here, this is probably relevant to our interests, but still none of our concern.

Re:Hard to Swallow (0)

Anonymous Coward | more than 2 years ago | (#40055083)

Stop! Please! My ass is still a virgin!

Re:Hard to Swallow (-1)

Anonymous Coward | more than 2 years ago | (#40055289)

Since both you and I are posting here, this is probably relevant to our interests, but still none of our concern.

that reminds me. i like when i have to take a shitpoopy!

Re:Hard to Swallow (-1)

Anonymous Coward | more than 2 years ago | (#40055441)

Why you little...! You fuckin' wussy!

You're nothing compared to me. I use Gamemaker! I've already returned to Gamemakerdom!

Re:Hard to Swallow (2)

the simurgh (1327825) | more than 2 years ago | (#40055045)

all we really need is a law saying that a person cannot sign away their genetic code and that a corporation cannot patent human genes. we need to punish big pharm not hospitals trying to determine whose the baby daddy.

Re:Hard to Swallow (2)

khallow (566160) | more than 2 years ago | (#40056309)

we need to punish big pharm not hospitals trying to determine whose the baby daddy.

We don't need to "punish" anyone who's obeying the law. If there's a problem, change the law not try to come up with punishment after the fact (which in itself is unconstitutional in the US) for legal activity.

Re:Hard to Swallow (1)

Mr. Slippery (47854) | more than 2 years ago | (#40056499)

If there's a problem, change the law...

And changing the law is exactly what's under consideration here. May I direct your attention to the fine headline. Thank you.

Re:Hard to Swallow (2, Insightful)

Anonymous Coward | more than 2 years ago | (#40055853)

The bill, dubbed the Genetic Information Privacy Act, would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic information

This just made sex a whole lot more complicated.

And that's the thing. You can have all the consent forms in the world but, with full genome sequencing dropping to about $1,000/genome, in a couple years getting someone's genome sequence is going to be about as difficult as getting their finger prints.

That's not to say that their shouldn't be some level of informed consent but it has to be weighed against the costs. For example, let's say you've got a kid with mild mental retardation (or motor skills deficit or whatever) and you'd like to know whether it's genetic and whether there's anything that can be done (in some, rare, case there actually is). Anyway, if it is a genetic condition (the kid wasn't just dropped on his head as a baby) then more often than not it's going to be caused by a complex combination of defective genes - e.g. you married someone from the same town who happened to be a distant cousin - or you just got really unlucky.

But... in rare cases it's actually going to be possible to pin the condition down to a specific defective gene. And, here's the problem, there's still a huge number of genes in the human genome that are not well studied and/or annotated. So, chances are, even if you pin down the gene, the genetic counselor/doctor you're working with won't be able to do much.

The good news is that there are research groups who study specific genes and/or who are very good at using bioinformatics to determine the function of unknown genes. So if you had a families with defects is specific, poorly understood, genes then such researchers could search the database for genes that they were experts in. Or they could even use the database to identify genes with medical relevance for further study.

But if you encumber the data with all kinds of insane informed consent requirements then, realistically it's just not going to happen. So, ultimately, families with rare genetic conditions are going to have to choose between privacy and the chance of having their disease studied, cured, etc. Or, maybe the state of California will take that choice awaya from families in California - which is not to say that informed consent is bad - just that one has to be very careful here.

Re:Hard to Swallow (2)

theshowmecanuck (703852) | more than 2 years ago | (#40057573)

Scientists seem to only think about the consequences of actions as they relate to their own research. Unfortunately, and although with the noblest of intentions, they often suffer from ivory tower syndrome and don't consider the implications of their research in a wider general context. No-one is stopping them from researching. The only thing that is happening here is something that seems to be rather new and refreshing: the general populace is finally attaching some ethical restrictions to the work.

The human race is wired for discrimination (it's why tribes form so easily). Discrimination can take the form of racism, but can also be used by insurance companies to exclude people from what I believe should be a fundamental human right: access to health care. Things that can be used to abuse this and generally invade privacy need to be avoided within reason. This seems reasonable. No-one is stopping them from researching genetics. Doctors need informed consent before doing anything to your body, its parts, or your mind. So why the hell shouldn't scientists? Many roads to ruin were paved with good intentions.

Finally: No-one is stopping them from researching genetics.

Re:Hard to Swallow (1)

Ihmhi (1206036) | more than 2 years ago | (#40058199)

And, here's the problem, there's still a huge number of genes in the human genome that are not well studied and/or annotated.

Right, because logic and ethics factor in when companies are being discriminatory.

"Our medical research division says there's a chance this gene causes cancer, so we're not going to hire you. Our insurance rates will skyrocket. Have a nice day."

Re:Hard to Swallow (0)

Anonymous Coward | more than 2 years ago | (#40056317)

This just made sex a whole lot more complicated.

What's the answer? A man writing down that the woman he just entertained/bribed can fuck him!

The proposal applies to analysis, retention and sharing. So as long as she doesn't store it (see 'Presumed guilty'), this legislation isn't relevant. So immediately destroying your genetic material is the perfect answer (Swallow. It's the law!). I don't know if pregnancy counts as 'retention': That would be a court-case; the unwilling father suing the pregnant woman for illegal retention and sharing. A man wouldn't do this on his first surprise pregnancy, but very possible when it's the second occurrence.

Does sex involve the woman sharing genetic material? She just has to write that she is easy and desperate. As a bonus, it also satisfies anti-rape laws (the man must prove she was easy and desperate) for those countries enamored with them.

It's not the retention of genetic material that is the real problem. It is the ability to link that unique DNA to you. If they really need DNA for science, they can do it with your DNA and history only. No name, photo (Some processing agencies demand one), address, or date of birth can be recorded.

Re:Hard to Swallow (0)

Anonymous Coward | more than 2 years ago | (#40056605)

analysis, retention,

Make sure you type all the letters in that part...

The world's tiniest violin plays for UCLA (4, Insightful)

jbeach (852844) | more than 2 years ago | (#40054911)

The University of California has submitted a formal letter objecting to the bill, estimating that the measure could increase administrative costs by up to $594,000 annually — money which would come out of the cash-strapped state's General Fund. The university has also expressed concern that its researchers would suffer competitive losses in obtaining research grants."

Too bad for them people's rights can be so inconvenient and costly. Oh well.

Re:The world's tiniest violin plays for UCLA (4, Interesting)

Shavano (2541114) | more than 2 years ago | (#40054979)

It's just a consent form. Make sure it assigns the right to use your genetic information for any research purpose you like, publish it, exchange it with others, etc. etc. Get your subjects to sign it and stuff it in a file cabinet. Done.

Is there an exception for law enforcement?

Re:The world's tiniest violin plays for UCLA (4, Insightful)

TubeSteak (669689) | more than 2 years ago | (#40055003)

It's just a consent form.

There's a reason so many shitty things in this world are opt-out.
If you make them opt-in, almost no one consents.
If you make it opt-out, even a small amount of effort is too much for most people.

You'd think the field of Medicine, with its strong emphasis on ethics, would understand the rational behind an opt-in system of DNA collection for research purposes.

Re:The world's tiniest violin plays for UCLA (1)

macraig (621737) | more than 2 years ago | (#40055143)

You'd think the field of Medicine, with its alleged strong emphasis on ethics, would understand the rational behind an opt-in system of DNA collection for research purposes.

FTFY.

Re:The world's tiniest violin plays for UCLA (3, Insightful)

davester666 (731373) | more than 2 years ago | (#40055147)

The thing is, it'll become an opt-in for everyone, at the doctors office. As in, oh, you need a test, here, sign this generic permission form which just happens to sign away your DNA for any purpose [not just testing for your own personal health].

Otherwise, big pharma would have to track which DNA samples have permission to use for research and which don't, and they just want to use everything.

Re:The world's tiniest violin plays for UCLA (0)

Anonymous Coward | more than 2 years ago | (#40055169)

They're already going to be tracking all sorts of information about each individual sample (it's not like they throw them all into a big DNA soup pool).

What's one more field? Heaven forbid they have to actually do work!

Re:The world's tiniest violin plays for UCLA (1)

davester666 (731373) | more than 2 years ago | (#40055215)

Its not that they can't track it. Its that they don't want to. They want to be able to use your DNA for, well, however they can.

Re:The world's tiniest violin plays for UCLA (0)

Anonymous Coward | more than 2 years ago | (#40055585)

You'd think the field of Medicine, with its strong emphasis on ethics, would understand the rational behind an opt-in system of DNA collection for research purposes.

Dr. Mengele, the Doctors of Tuskegee syphilis study, the thousands of Doctors who perform sex-selective abortions, and the thousands of Doctors who defraud Medicare have proven that this "emphasis" you mention is only window dressing.

Re:The world's tiniest violin plays for UCLA (3, Interesting)

rtb61 (674572) | more than 2 years ago | (#40055725)

When it comes to ethics and psychopathy being tied to genetics, should privacy be allowed when seeking elected office or taking a major role in a corporation. When it comes to person convicted of crime should psychopathic tendencies as indicated by their genes be hidden from future partners, how far is that they find out by being beaten to death. So perhaps some genetic traits can be secret but others should be divulged under certain circumstances. No psychopaths in political office, as police or teachers. If your child was marrying a psychopath would you accept it be kept a secret from them or would you want the information to be provided to them before it's too late.

Re:The world's tiniest violin plays for UCLA (1)

Anonymous Coward | more than 2 years ago | (#40056343)

... some genetic traits can be secret but others should be divulged ...

This is an old question. Watch the movie 'Gattica'.

Re:The world's tiniest violin plays for UCLA (2)

Mr. Slippery (47854) | more than 2 years ago | (#40056539)

So perhaps some genetic traits can be secret but others should be divulged under certain circumstances. No psychopaths in political office, as police or teachers.

Thank you for perfectly illustrating the danger here.

There is no genetic trait that corresponds one-to-one with psychopathy. There may (or may not) be certain genetic traits associated with a increased risk of psychopathy. As this distinction is pretty much lost on the general public, it is important that we do on brand people who have a greater change of developing psychopathy as actually being psychopaths. This is why genetic privacy is crucially important.

Re:The world's tiniest violin plays for UCLA (5, Insightful)

wrook (134116) | more than 2 years ago | (#40055745)

I have no problem with researchers using my data to help with their research. I *do* have a problem if they receive a patent based on my data. I'm quite happy to have them do whatever research they want, but I don't like the idea that they will get exclusivity for something that was derived from something I gave them for free.

Can we have a copyleft for our medical data? You can use it, but only if the result is free (as in freedom) to use.

Re:The world's tiniest violin plays for UCLA (2)

Jafafa Hots (580169) | more than 2 years ago | (#40056007)

Wish I had mod points.

It's fine with me if my DNA is used to help research. It's NOT fine with me if my DNA is used to get a patent.

Re:The world's tiniest violin plays for UCLA (2)

WaywardGeek (1480513) | more than 2 years ago | (#40056015)

TFA of course says nothing about the lost profits to genetic researchers who may no longer being able to patent parts of your genome without your consent. Their concern over the totally inflated number of $500K/year in administrative costs is sickening.

In reality, the cost wont be in filing the forms. The cost will be in explaining to every patent who has blood drawn that the hospital wants to "own" your blood, including any patents that can be made on it, or cell lines that could be derived from it. They'll be in the embarrassing and time consuming position of explaining to patents that they actually do with parts of their bodies.

Hopefully, I will soon have my entire exome sequenced in a clinical trial. I don't mind signing a form giving them ownership of a sample of my blood, but I prefer to own the rest. I'm just upset they wont let me have a copy of my exome. They are planning on destroying the data when the trial is finished, because they don't want get distracted by the debate over ethics. I understand their point of view. They just want to do some science, and could the hysterical crowed please go away?

I have about four inherited defects I know of. My relatives get cancer at a rate not likely to be coincidence. My red cones mostly don't work, which is a rare form of color blindness. I've got a weird inherited form of ADHD thing that makes reading difficult, but seems to enhance 3D visualization ability (try imagining the shape of the intersection of three perpendicular cylinders). Likely as not, I've also got Stargardt's Disease, which is causing me to lose central vision. I'm also a big geek capable of analyzing my exome and writing code to compare it to an exome database, taking into account a genetic knowledge base. It just kills me that I wont get a copy of my data.

Re:The world's tiniest violin plays for UCLA (3, Informative)

RDW (41497) | more than 2 years ago | (#40056207)

Their concern over the totally inflated number of $500K/year in administrative costs is sickening.

If anything, translating this to a $500k admin cost grossly underestimates the impact on research. Many types of work will become completely unworkable in California, if TFA is accurate:

"Under the newly proposed bill, a person's genetic information may only be accessed by individuals specifically named on a consent form, and only for purposes written on the form. Genetic information along with the original samples must be destroyed once their specified purposes are fulfilled."

We routinely run genetic tests, all the way up to whole exomes, on tumour and normal samples from a collection donated by thousands of different patients (anonymous to us). Most ot the people curently working in our lab (not to mention collaborators in other labs) had not even joined when the bulk of the samples were collected. It would be completely impractical to seek fresh consent from every relevant patient whenever a new researcher needed to run a test or access a piece of data. It would be a tragic waste to destroy data and precious samples prematurely (and usually against the wishes of the donors, who typically want us to do all we can with the material).

Far from being worried about 'lost profits', many researchers share your concern about gene patents (and very few profit from them directly!). But this is not the way to the address the problem - we need reform of the patent system, not unduly restrictive 'DNA privacy' laws.

It just kills me that I wont get a copy of my data.

Usually you'll be anonymous to the people with access to the raw exome data, and there's probably no mechanism for feeding it back to a named donor. This type of research will also be subject to a strict legal and ethical framework which will not permit the researchers to act as providers of genetic tests to named individuals. If you want an exome you'll probably have to get it done privately - should be about the price of a mid-range laptop right now, with whole genomes falling into this range within a couple of years. How useful it will actually be to you at this point is unclear, unless you happen to have a condition with a simple and well-defined genetic association. Note also that comparisons with anyone else's data will not be possible if DNA privacy laws become so strict that public databases can't be created in the first place...

Good thing corporations are people now! (0)

Anonymous Coward | more than 2 years ago | (#40056613)

The "individuals" named on the consent form will be companies, not "natural persons", so we'll have companies whose sole purpose is to be traded between the other companies or research groups who want access to the genetic information.

U of C is entirely correct that, as written, the bill would offer zero privacy protection while adding to administrative costs to manage those shell companies. For the bill to offer real protection it would have to prohibit individuals from giving anyone other than specifically named natural persons permission to access their genetic information. Legally establish that it is "against the public interest" (like prenuptial agreements that agree never to seek a divorce) to allow individuals to enter in to a contract that gives any broader access to their (well, technically their families) genetic information.

Re:The world's tiniest violin plays for UCLA (1)

kharchenko (303729) | more than 2 years ago | (#40057411)

This type of research will also be subject to a strict legal and ethical framework which will not permit the researchers to act as providers of genetic tests to named individuals.

This is indeed the case currently, but I think that's wrong. If you're expecting donors to go out on a limb and sign a blanket consent form allowing their samples to be used for honest research purposes, there should be a reciprocal way for us to provide data back to them. It will require yet another consent form or other legal framework, but putting in effort to make that possible seems only fair.

Re:The world's tiniest violin plays for UCLA (1)

laffer1 (701823) | more than 2 years ago | (#40056829)

> You'd think the field of Medicine, with its strong emphasis on ethics, would understand the rational behind an opt-in system of DNA collection for research purposes.

We're not talking about the field of medicine, we're talking about the profit center of medicine, the drug companies. This makes it harder for Pfizer researchers to come out with new useless drugs to grow hair or any number of other things.

Re:The world's tiniest violin plays for UCLA (1)

dondelelcaro (81997) | more than 2 years ago | (#40057371)

We're not talking about the field of medicine, we're talking about the profit center of medicine, the drug companies.

While this does affect big pharma a little bit, the vast majority of genetic testing for association currently occurs in academic settings. This bill has the potential for significantly increasing the difficulty of determining which genetic variants cause important diseases, reducing the ability of researchers in California to participate in research in this field.

Re:The world's tiniest violin plays for UCLA (1)

zlives (2009072) | more than 2 years ago | (#40057821)

so pharma's are ok with saying that results from this research can NEVER be wholly or partially copyrighted/patented. or that the university will not directly or indirectly profit from this research and all data will be made public... and lets include the insurance companies in here as well...

Law Enforcement Exception (0)

Anonymous Coward | more than 2 years ago | (#40058291)

The FBI keeps a database of fingerprints. They retain information on the following three categories of people:

1) Criminals, suspects, etc.
2) Healtcare professionals
3) Educators

They collected my fingerprints a few years ago, about five years after conducting a complete multi-state background check on me. Although I asked, the union did not lift a finger to protest the collection of fingerprints without due cause. There is no way to expunge my information from their database.

Soon, they will come back around to my school to demand my DNA. Do you see something wrong with this picture?

Re:The world's tiniest violin plays for UCLA (4, Interesting)

Bieeanda (961632) | more than 2 years ago | (#40054993)

Yeah. I'm sure I echo the family of Henrietta Lacks when I say 'Fuck 'em.'

Re:The world's tiniest violin plays for UCLA (1)

macraig (621737) | more than 2 years ago | (#40055153)

You know I modded your comment up, but then got stupid and commented elsewhere and negated my own modding. Hopefully someone else can make up for my goof.

Re:The world's tiniest violin plays for UCLA (1)

nbauman (624611) | more than 2 years ago | (#40055285)

Henrietta Lacks got the best treatment available at the time, free, and unfortunately it couldn't save her. In exchange, the doctors used a sample of her tumor to save patients in the future. What's wrong with that?

People live a lot longer these days, because of research like this. Do you want to go back to medicine as it was in 1900?

Re:The world's tiniest violin plays for UCLA (2, Informative)

Anonymous Coward | more than 2 years ago | (#40055405)

The fact that those doctors are making *MONEY* off it, and her and her family aren't? If it was non-profit and shared with all who needed it, maybe, but as a big money business the HL cell cultures are an insult to 'supposed' medical ethics everywhere. Nevermind that they didn't ask for permission, and it was only revealed... what, 20-30 years later?!??!

And saying this as a white dude: Just another example of the rich white upper class screwing those below them for their own benefit.

Re:The world's tiniest violin plays for UCLA (1)

dondelelcaro (81997) | more than 2 years ago | (#40057397)

The fact that those doctors are making *MONEY* off it, and her and her family aren't? If it was non-profit and shared with all who needed it, maybe, but as a big money business the HL cell cultures are an insult to 'supposed' medical ethics everywhere.

You're mistaken. HeLa cells are banked by ATCC, which is a non-profit organization which provides the cells to other cell banks which provide them to researchers at cost. The cells themselves are typically not sold for profit. [They are expensive, but that's because media, refrigerant, and people needed to propogate them aren't free.]

Re:The world's tiniest violin plays for UCLA (0)

Anonymous Coward | more than 2 years ago | (#40055081)

If you would read the letter they wrote (before assuming that university researchers don't care about people's rights), you'll notice that their problem with it isn't having to get permission, it's that the bill is very broad, you need permission for every thing you do with the data, and that existing measures for privacy protection work well already.

SB 1267, as amended on May 1, 2012, defines genetic information to include not only
information obtained from genetic tests of the individual but also information obtained from
genetic tests of the individual’s family members, and the manifestation of a disease or disorder in
family members of the individual. An individual’s genetic information could not be obtained,
analyzed, retained, or disclosed without specific written authorization. A separate written
authorization would be required for each separate disclosure of an individual’s genetic
information. Each violation of the provisions of SB 1267, even if accidental or no actual risk of
harm to the patient exists, would result in a penalty $1,000 to $10,000 plus court costs.
...
SB 1267 would require that an individual’s genetic information only be used for the specific
purpose, by the specific individuals indicated on the authorization form, and that all genetic
information be destroyed once the specific purpose is fulfilled. These restrictions are simply not
feasible. A single research project may involve many researchers, graduate students, research
assistants and others who would need to obtain, analyze, retain and disclose genetic information.
...
Further, although the bill requires genetic information to be destroyed once the identified
purpose of the use of the genetic information is fulfilled, existing record retention laws require
research and medical records to be retained for years after research and patient care activities are
completed.
...
Finally, UC is concerned that the disclosure penalty provisions in the bill could result in costly
litigation and fines for accidental or unintentional disclosures of genetic information that are
made without authorization during the course of legitimate research and patient care activities.
Additionally, SB 1267 requires that the form the patient must sign to authorize each separate
disclosure be in a typeface no smaller than 14-point type, include specific language and be a
“separate document, not attached to any other document, and shall not be more than one page.”
However, the required language will not fit on one page if it is in English in 14-point type. Thus,
UC could be subject to fines and penalties should it not obtain authorization on a written form
that contains the precise language prescribed by the bill in the specific manner prescribed by the
bill.

It looks like the thing even has a provision where you have to dumb things down. No longer than a page, yep, that's how scientific and medical research procedures should be described. Wouldn't want to confuse anyone.

Re:The world's tiniest violin plays for UCLA (3, Interesting)

Baloroth (2370816) | more than 2 years ago | (#40055107)

First of all, it isn't really a right, at least not yet, and second, without looking at the specific provisions and language of the bill you cannot tell whether or not the restrictions placed are reasonable. It certainly wouldn't be the first time an apparently well intentioned bill was written in such a way as to be incredibly and excessively difficult and expensive to follow. For one thing, TFA mentions that the only people who can access the information are people listed in the consent forms, which means any person doing the research as well as anyone assisting needs to be named, which is a massive PITA. It might even mean certain scientific papers couldn't be published, if it required disclosure of specifics about the genetic information (which is often the point). I feel that a scientists might object to such restrictions.

It would also require any current studies to gain the permission of anyone whose genetics they are currently studying (often thousands for each study), and it essentially means they would have to completely throw out every single data set they have collected once the study is done, too. All in all, these are scientists doing research making the complaint. I don't think their goal is to infringe people's privacy.

And ironically, the bill will probably decrease the privacy of people involved in the research. Since each use requires the authorization of the individuals whose genetics are involved, you can't permanently anonymize the data: someone needs to be able to find out to whom each strand of DNA they are working on belongs (and show proof that each individual has given consent), which means the current anonymization that is standard cannot be employed. Translation: for research purposes, the bill might well end up doing the exact opposite of what is intended.

Re:The world's tiniest violin plays for UCLA (5, Informative)

nbauman (624611) | more than 2 years ago | (#40055273)

I once read a study done in Sweden to find out how accurate a prostate cancer test was.

30 years ago, they had done a study of cholesterol, and saved the blood samples. So they could go back, thaw out the blood samples, and see what the PSA level was. Then using Sweden's wonderful medical records, they could find out how many of them had died of prostate cancer at each level of PSA.

This was very useful. If you go to a doctor, and he tells you you have an elevated PSA, you want to know whether it's something you can safely ignore or whether you have to get surgery (which leaves you impotent about half the time and with urinary incontinence about half the time).

If they had laws like the ones proposed here, they just couldn't have done it. It's one thing to have a collection of 100,000 blood samples that you can feed into an automated testing machine. Its another thing entirely (and much more expensive) to have to track down 100,000 subjects from a 30-year-old research project, many of whom have died (including the very people whose blood is most important to test).

Or suppose you turn 60 years old and go to the doctor for a routine exam. Your blood test results come back and he tells you you have chronic lymphocytic leukema. Some people die in 6 years. Other people die in 30 years. He can't tell how long you've got.

Well, now he can tell how long you've got. There's a DNA test. People with one mutation live 6 years, and people with another mutation live 30 years.

Obviously they didn't get signed permission from people with leukemia to test their DNA and follow them for 30 years. They went back and tested stored blood samples of people who died after 6 years and people who died after 30 years.

I don't want to oversell genetic studies. They're at a very early stage. But there are a lot of successful results. Doctors can tell who needs dangerous, debilitating medication in order to have a chance to live a little longer, and who can just skip the medication. They can get clues to new drugs. There are great promising results too complicated to explain here. But if they had to go through these specific informed consent forms described in the Nature article, they simply couldn't do it. It's like prohibiting stem cell research.

Re:The world's tiniest violin plays for UCLA (3, Insightful)

martin-boundary (547041) | more than 2 years ago | (#40055379)

That's what privacy is. "The state of being alone or kept apart from others". It means you don't get the benefits, but you're also not subject to the abuses.

Overall, I think that most agree that the abuses outweigh the benefits these days. With Facebook like corporations mining data from literally millions of people, the benefit of scientists having access to the names of 100 thousand people in a study isn't comparable, even if they are able to incidentally warn or help maybe 50 who exhibit certain symptoms.

We've created psychotic monster corporations, and now we have to accept the consequences, which includes a steep price to limit the privacy problem and an even greater economic one if we decide to fix it.

Re:The world's tiniest violin plays for UCLA (1)

nbauman (624611) | more than 2 years ago | (#40055453)

What abuses are you subject to if you join a medical study that gives you the best treatment available and also studies your outcomes?

If you go to the doctor with a life-threatening disease like cancer or heart failure, you want the best treatment available, based on the experience of doctors treating this disease over the last hundred years. You're benefiting from their spending the last hundred years recording the records of patients, and aggregating them for study.

The death rate from heart disease is about a third today what it was 50 years ago. That's the benefit. I don't see how it hurts anyone to have doctors record their outcomes. It helps them. It prevents them from taking useless or harmful treatments, and it allows them to take effective treatments. How is that abuse?

Re:The world's tiniest violin plays for UCLA (0)

Anonymous Coward | more than 2 years ago | (#40055525)

In the end, it should be their decision if they want them to keep records of it, though.

Re:The world's tiniest violin plays for UCLA (1)

martin-boundary (547041) | more than 2 years ago | (#40055647)

What abuses are you subject to if you join a medical study that gives you the best treatment available and also studies your outcomes?

If your privacy is breached, your future insurance rates can unfairly suffer, you can be denied other treatments, your genes can be patented by companies causing increased costs for other researchers later, your relatives can be identified as being higher risk (therefore higher premiums for them as well etc). That's just medically. Your mortgage rates and loan approvals can be affected, your kids school application can be denied etc. That's when other companies and organizations buy your records or pay some company for data mining publically available information, which is what happens to nonprivate data.

You should be allowed to make an informed decision if that is what you want, and for how long you want to make this information available. Also, your children won't thank you for making decisions which affect them adversely, so they should have a say too.

It didn't matter so much when records used to be kept on yellowing paper in a basement where nobody would go searching for them, but when it's in a computer file that gets traded around to lots of companies it matters. Moreover, when that happens, conversion errors always creep in and the records become corrupted, and you can even end up with several diseases and deaths that you never knew you had.

Re:The world's tiniest violin plays for UCLA (1)

vakuona (788200) | more than 2 years ago | (#40056133)

Then make laws disallowing the use of genetic testing, or any medical testing in general, for setting premium rates. Insurance companies won't mind. As long as there are no loopholes allowing other competitors to use such information. Hell, it might even reduce their costs. The issue with such blanket privacy laws is that they will always have unintended consequences, and the only people who benefit are lawyers, who get to sue and try the cases that will inevitably result.

Re:The world's tiniest violin plays for UCLA (1)

martin-boundary (547041) | more than 2 years ago | (#40056215)

The issue with such blanket privacy laws is that they will always have unintended consequences, and the only people who benefit are lawyers, who get to sue and try the cases that will inevitably result.

That makes no sense. A blanket law has no loopholes, it applies to everything. It's specific laws like you suggest here that are riddled with loopholes:

Then make laws disallowing the use of genetic testing, or any medical testing in general, for setting premium rates.

Let me count the loopholes: it still allows use of genetic testing for accepting/rejecting individuals, it allows it for all fees that aren't premium rates, it allows it for any other actions which aren't specifically discrimination of medical insurance type, etc.

You've got it exactly backwards. Privacy laws are on the table, but you think that taking them off the table and letting everyone do what they please is better because that will reduce(!) opportunities for lawyers? Not only will that lead to more lawsuits, it will require the lawsuits to identify new laws that are needed to reduce the lawsuits.

Re:The world's tiniest violin plays for UCLA (1)

Rich0 (548339) | more than 2 years ago | (#40056311)

Then make laws disallowing the use of genetic testing, or any medical testing in general, for setting premium rates.

That is impossible to enforce. Sure, it makes it hard to systematically discriminate, but it is impossible to know what criteria some individual used when making a decision. You need to hire somebody. You have 50 applications, and 10 qualified applicants. You pick 1 and discard 9. You don't tell any of them anything but "you're hired" or "sorry." How do the 9 know whether you used genetic information to discriminate against them?

Insurance companies won't mind.

Uh, insurance companies won't mind not having access to information that affects the actuarial tables, that their customers DO have access to?

However, part of me thinks that privacy is almost entirely a thing of the past. Oh, it will take a while for the transformation to finish, but at some point everybody will know everything about everybody else. Laws will simply have to deal with the consequences and not try to prevent them. The first consequence I can think of? Well, that insurance thing you mentioned will probably go away. Once I can prick your finger and tell you your life expectancy (barring accidents) to within a year, you'll either decide you don't need insurance, or you won't be able to afford insurance.

I think socialism is about the only likely outcome of all of this - or what most of us would consider a very cruel world. People will be essentially written-off at a young age, and their only means of survival will be public assistance. Others will be chosen for greatness, and they'll either watch everybody else suffer around them, or help them out. Some of the criteria used to select people will be genetic, and others will be behavioral, but either way everybody will have you characterized and put in a box, and your worth will be measured accordingly.

Re:The world's tiniest violin plays for UCLA (1)

Mr. Slippery (47854) | more than 2 years ago | (#40056571)

I think socialism is about the only likely outcome of all of this

What in the world does an economic system based where workers and the people, rather than a state-backed owning class, control the means of production, have to do with anything under discussion here? Or do you just have no idea what "socialism" means?

Re:The world's tiniest violin plays for UCLA (1)

Rich0 (548339) | more than 2 years ago | (#40056595)

I used "socialism" in the sense that 99% of people reading my post would understand. Feel free to substitute whatever you feel the appropriate term is accordingly when you read it. If you still don't understand my post, then pretend that you didn't read it. :)

Quibbling over definitions is about as productive as debating proper grammar.

Re:The world's tiniest violin plays for UCLA (1)

nbauman (624611) | more than 2 years ago | (#40056889)

You used "socialism" like the right wing uses it, as an epithet you don't understand, in a different way than the history and economics textbooks use it, to invoke a generalized fear of government, and confuse the issues. That's why they call Obama a "socialist".

You're not using it in the sense that 99% of the readers understand it, if those readers ever understood a high school history or economics class.

It certainly is productive to have precise definitions. Otherwise, you can't communicate. Everybody else has a specific definition of socialism, and you're using it to mean something else. You wind up speaking (literally) nonsense.

Under socialism, there are no private health insurance companies, so you don't pay premiums and no one raises your premiums. The government pays for all or most health care. There are lots of socialist health care systems around the world, they all do genetic testing, and none of them charge more money for people with genetic diseases. I read medical studies that were done in England, which has socialized medicine, and they give very expensive treatments to people with genetic defects, and it's all paid out of the general taxes. We should be so lucky as to have socialized medicine.

When you talk about socialism like that, you send a strong signal that you don't understand the issues.

Re:The world's tiniest violin plays for UCLA (1)

Rich0 (548339) | more than 2 years ago | (#40057205)

Under socialism, there are no private health insurance companies, so you don't pay premiums and no one raises your premiums.

Yup, hence the reason I suggested that socialism was inevitable - private insurance simply won't be able to exist. Not because somebody outlawed it, but because it just isn't financially viable - nobody will buy it, because everybody will either not need it or not be able to afford it. As a result we'll either be living in a socialized world, or one where we just let people die on the streets.

When you talk about socialism like that, you send a strong signal that you don't understand the issues.

Like what? You haven't pointed out whatever it was that I said that you're apparently bothered by. It seems to me that we're both describing the same thing.

Wall Street called... (0)

Anonymous Coward | more than 2 years ago | (#40056667)

Once I can prick your finger and tell you your life expectancy (barring accidents) to within a year, you'll either decide you don't need insurance, or you won't be able to afford insurance.

While i agree with your general point, that's pretty much the same assumption AIG thought was a valid basis for all those CDOs they agreed to reinsure and look how well that turned out for them

Re:Wall Street called... (1)

Rich0 (548339) | more than 2 years ago | (#40057171)

While i agree with your general point, that's pretty much the same assumption AIG thought was a valid basis for all those CDOs they agreed to reinsure and look how well that turned out for them

I'm not sure this is a great comparison. Suppose I told you that I had a black box that would tell you how old you would be if you died of health-related issues. Then I showed you data showing how for the last 200 years it had never been wrong more than 0.001% of the time. It says that you won't die until 110. Would you spend a lot of money on life insurance, other than an accidental death policy? How about health insurance?

Sure, we won't be at that point for at least 200 years, but I'm talking about the long term. Eventually we'll have this stuff figured out, and many things we take for granted simply won't be able to work the same way. Hopefully by the time we have this kind of technology we can make much of human suffering obsolete as well, but we'll see...

Re:Wall Street called... (0)

Anonymous Coward | more than 2 years ago | (#40058209)

While i agree with your general point, that's pretty much the same assumption AIG thought was a valid basis for all those CDOs they agreed to reinsure and look how well that turned out for them

I'm not sure this is a great comparison. Suppose I told you that I had a black box that would tell you how old you would be if you died of health-related issues. Then I showed you data showing how for the last 200 years it had never been wrong more than 0.001% of the time. It says that you won't die until 110. Would you spend a lot of money on life insurance, other than an accidental death policy? How about health insurance?

Until 2007 Moodys thought they had data showing that their algorithms were wrong a lot less often than that.

But since you don't seem to be getting it I will try a different tack: a lot of people, likely including yourself, think they are super awesome drivers who would never cause an accident. Do you pay your state's opt-out-of-insurance fee or do you have car insurance anyway just in case of an accident? Health insurance doesnt just cover crap that your body does to you; it also covers crap that other people do to your body. So unless you dont care whether you get fixed up after god drops a sheet of ice off a building on your head an intelligent person will always prefer to be insured.

Re:The world's tiniest violin plays for UCLA (1)

stephanruby (542433) | more than 2 years ago | (#40055813)

...without looking at the specific provisions and language of the bill you cannot tell whether or not the restrictions placed are reasonable.

For once, the draft of the proposed law is linked directly from the Slashdot description. It's still pretty rough around the edges, but I personally can't see anything wrong with it. Can you?

The one part it doesn't mention is life insurance. Life insurance is such a tricky subject when it comes to dna privacy. When the last dna anti-discrimination law was passed in the US and signed into law by President Bush, health insurance was specifically included, but life insurance was specifically excluded from its protection.

The idea is that if someone knows when he's about to die because of some dna defect, it's pretty obvious that the person will try to get as much life insurance as he can just before he dies.

Half a mill? Really? (2)

atari2600a (1892574) | more than 2 years ago | (#40054915)

Seriously that's like chump change to the UC system...

Re:Half a mill? Really? (1)

Shavano (2541114) | more than 2 years ago | (#40054981)

If it costs them more than 10% of that, they're not handling it right.

Re:Half a mill? Really? (0)

Anonymous Coward | more than 2 years ago | (#40055001)

They're a university. By law, they must go with the highest bidder, then spend twice as much money implementing it themselves when the bid doesn't go through, and then after that, they have to give a share to the sports team.

Basketball is the big one at UCLA, lots of hoops to shoot through.

Where else will the politicians get graft going, if not through education? The voters love more money in education. Just check the testing requirements! Billions and billions spent, not one honest answer.

But it's all accountable! (Which means they hire lots of accountants to track the numbers!)

Re:Half a mill? Really? (1)

joocemann (1273720) | more than 2 years ago | (#40055013)

Don't forget that 500k only seems like a lot to a individual. 500k to the 7th largest economy in the world (go Cali!) is negligible.

In perspective:
Thats the cost of 7 (maybe less) UC bachelors degrees.

On the national news scale... 12 million on DOJ muffins? Negligible. 300 BILLION on a new fighter jet when we already rock. 100:1 DR? Absurd.... and yet thatsnot as newsworthy as muffins....

Re:Half a mill? Really? (1)

joocemann (1273720) | more than 2 years ago | (#40055019)

Frikkin smartphones....

It should say "...rock a 100:1 KDR..." thats kill to death ratio for non gamers...

Re:Half a mill? Really? (0)

Anonymous Coward | more than 2 years ago | (#40055061)

Frikkin smartphones....

It should say "...rock a 100:1 KDR..." thats kill to death ratio for non gamers...

Smartphones were framed. It's proofreading's fault!

Re:Half a mill? Really? (0)

Anonymous Coward | more than 2 years ago | (#40055065)

It depends on how many samples they are handling. Assume that 10 forms can be processed per hour. (Between contacting the individual, getting it signed, scanning and filing.) Assume staff cost $10/hour. That is a mean cost of $1/sample. Need a large sample for statistical purposes and the costs will mount. This estimate is also low balling it. Staff costs will be at least double. Even paying near minimum wage still involves payroll taxes. The processing time assumes permissive donors who need minimal explanation. Auditing records for compliance, auditing research for compliance, and administrative overhead to access those records were not included in my estimate. So yes, regulations are costly.

Re:Half a mill? Really? (1)

causality (777677) | more than 2 years ago | (#40055103)

It depends on how many samples they are handling. Assume that 10 forms can be processed per hour. (Between contacting the individual, getting it signed, scanning and filing.) Assume staff cost $10/hour. That is a mean cost of $1/sample. Need a large sample for statistical purposes and the costs will mount. This estimate is also low balling it. Staff costs will be at least double. Even paying near minimum wage still involves payroll taxes. The processing time assumes permissive donors who need minimal explanation. Auditing records for compliance, auditing research for compliance, and administrative overhead to access those records were not included in my estimate. So yes, regulations are costly.

Yeah. All of that, just to avoid giving you a license to take someone's DNA information against their will and probably without compensation, even though you plan to benefit in some way from doing it. The nerve! In fact, anyone I select should be forced to submit to me anything of theirs that I decide I want, however intimate and personal. Otherwise, why, we might not be able to cut corners and forgo all those expensive "ethics" and shit when we do some research. Clearly you see the dilemma.

So it should be obvious, we must oppose a DNA privacy law. If such a law gets passed, the terrorists win! We can't have people thinking that you need their consent to harvest whatever you like from them.

Re:Half a mill? Really? (0)

Anonymous Coward | more than 2 years ago | (#40055311)

I'm the anonymous coward that you're responding to. I agree with your sentiment, albeit not with your tone. What I was pointing out is that the costs are not trivial. Since I also have a bias towards pure research, I also believe that accommodations need to be made, not so much because of the profit motive, which is a nonissue IMHO, but because of abuses (e.g. insurance, employment, patents).

Re:Half a mill? Really? (2)

nbauman (624611) | more than 2 years ago | (#40055229)

You can't process 10 forms per hour.

First, you often can't find people. There was an article in the New England Journal of Medicine by a doctor who made the point that it's often impossible to find patients, once they walk out the hospital door. The hospital had treated an infant, then afterwards somebody decided that there was a slight possibility that the infant had a life-threatening but treatable condition. They called the cell phone number the mother had given in her hospital intake, and it was disconnected. She had given the name of somebody to call in case of emergency, and that number didn't work either. With the end of landlines, it's much harder to find people. They frantically tried to track her down, and finally found her because of a lucky break.

Then there's the problem that when you're researching fatal diseases, the people you're trying to find are often dead. So they can't give permission.

Their relatives often move. Sometimes a doctor calls them and they just don't want to talk about it any more.

A lot of people don't want strangers to track them down, so they make it difficult. A lot of people are worried about debt collectors (often because they have big unpaid medical bills), process servers, police, immigration authorities, etc. So when you call somebody's mother, she may not want to give the person's new address.

Furthermore, it's not just a matter of calling up and getting permission on the phone. It has to be in writing. Does the signature have to be witnessed? Notarized? What do you do, send a witness over to their house with a notary?

It has to be informed consent, so you can't just have a minimum-wage clerk do it, you need somebody to explain the risks and benefits.

You could wind up spending more money getting permission than you do on the actual tests.

One of the big problems with getting permission is that you get a biased sample. For example, the people who are dead can't give permission. So you might wind up getting the DNA sequences of people with a less aggressive disease.

Re:Half a mill? Really? (0)

Anonymous Coward | more than 2 years ago | (#40055605)

Did they try to contact the child's father? Oh wait, fathers don't have rights and most of them don't have any sense of responsibility.

Re:Half a mill? Really? (2)

geekmux (1040042) | more than 2 years ago | (#40055007)

Seriously that's like chump change to the UC system...

Congratulations. You just re-affirmed how a state can manage to get over $600 billion in debt. Like my old boss used to say, a million here, a million there...pretty soon, we're talking about real money.

Re:Half a mill? Really? (0)

Anonymous Coward | more than 2 years ago | (#40055195)

California's debt can be laid at the hands of one thing.

The ballot box. The people vote for things, they vote not to pay for them.

Yay?

Re:Half a mill? Really? (1)

pesho (843750) | more than 2 years ago | (#40055353)

Yep. It's way less than they pay their president (~ $800K including perks)

Re:Half a mill? Really? (0)

Anonymous Coward | more than 2 years ago | (#40057927)

The $500k figure is for the increase in the administrative cost for research only. They also projected losing access to "hundreds of millions of dollars in research funding" because they simply couldn't perform certain types of research (essentially, anything involving human patients with a condition that has a genetic component). Also, while they said that they haven't run a cost analysis for the administrative cost increase for the UC medical system, it would likely be in the tens of millions of dollars.

Gattaca (0)

Anonymous Coward | more than 2 years ago | (#40054943)

Does that mean gattaca is a lie?

Re:Gattaca (1)

TaoPhoenix (980487) | more than 2 years ago | (#40055601)

Nah, I searched for Gattaca and you were the only one to see that angle. Bravo AC.

Nah, this is a "California" law. As soon as pre-predicting genetic diseases proves nice and lucrative for insurance companies, they'll write a federal law that makes the Cali law go away.

mitt romney health care = DNA existing condition (1)

Joe The Dragon (967727) | more than 2 years ago | (#40054967)

mitt romney health care = DNA existing condition.

That is where DNA testing is going.

Re:mitt romney health care = DNA existing conditio (-1)

Anonymous Coward | more than 2 years ago | (#40055193)

mitt romney health care = DNA existing condition.

That is where DNA testing is going.

1. You're a nigger.

2. Second-graders receive F's for English skills better than yours.

3. Eat a dick. Preferably a niggerdick. Double preferably a herpes-infested uncircumsized niggerdick with a thick coating of nasty moldy dick-cheese. YUM!

Re:mitt romney health care = DNA existing conditio (0)

Anonymous Coward | more than 2 years ago | (#40055519)

Mitt, you have to have *something* better to do than troll slashdot, don't you?

DNA testing of criminal suspects (4, Interesting)

davidwr (791652) | more than 2 years ago | (#40054973)

They should go one further and replace "uniquely identifying" DNA testing of criminal suspects with "just enough DNA to exclude the suspect" tests, repeated as needed with different parts of the DNA until the suspect is cleared or it's really his DNA.

Instead of testing a few dozen markers all at once and keeping that data on file, test only one or two. If it's a match, test another marker or two, and so on. Stop and cut the guy loose as soon as you find a mis-match.

Not only is this more morally justifiable than taking a full DNA "fingerprint," it will cut down on people who object to having DNA taken because they either know or believe they have left DNA at a place where a crime occurred in the past (even if they didn't commit any crimes) or they believe they are likely to do so in the future.

Also, change arrest-expunction laws for those who aren't convicted so that once the case is closed OR once it's obvious that the state isn't still looking at a given suspect, his DNA, fingerprints, etc. are automatically destroyed, without the former suspect having to hire a lawyer or pay fees to make it happen.

Re:DNA testing of criminal suspects (2)

reve_etrange (2377702) | more than 2 years ago | (#40055767)

These are all good steps. For me, though, the main issue with DNA testing of criminal suspects is its unreliability. Hopefully as sequencing costs continue to fall rigorous testing will become required.

10 of 9 comments loaded (0)

davidwr (791652) | more than 2 years ago | (#40054983)

"10 of 9 comments loaded"

WTF?

monetizing personal information (0)

Anonymous Coward | more than 2 years ago | (#40055005)

"a costly and damaging effect on research." ... in other words, the universities' and drug companies' current business models of "take peoples' medical samples and information under the pretense of promoting human well-being through research, and monetize that into products bringing in huge amounts of money" is threatened. Oh, and any information they derive about you goes to the insurance companies, via the Medical Information Bureau.

Yeah, right (2)

markdavis (642305) | more than 2 years ago | (#40055015)

>"would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic informationâ"including DNA, genetic test results, and even family disease history."

Unless, of course, it is the government taking the samples on people just ACCUSED of a crime. And that information will never be wiped and will be stored and forwarded to every shady agency that wants it..... in the name of keeping us safe from terrorists. Just like fingerprints.

Doesn't matter. Such legislation would never pass, and even if it did, it is just California and has nothing on the Fed.

Warning (2)

EnsilZah (575600) | more than 2 years ago | (#40055021)

DNA is known to the State of California to cause cancer and birth defects or other reproductive harm.

Re:Warning (0)

Anonymous Coward | more than 2 years ago | (#40055559)

That's why I only eat DNA-free food.

Re:Warning (1)

finlandia1869 (1001985) | more than 2 years ago | (#40056263)

No, no. Since everything appears to cause cancer and other nasty effects in California, the first thing you should consider is whether California is in fact the cause.

Basic math (2)

slashdyke (873156) | more than 2 years ago | (#40055029)

I have to ask why written consent is going to cost the university $594,000 annually. Surely, one of their law students could draft a consent letter to be reviewed by a practicing lawyer - maybe one already on staff. That should only cost a few hundred dollars - maybe a couple of thousand if the lawyer is famous and expensive. Then there is the cost of a filing cabinet to store the letters. Maybe paper for photocopies. And Say 15 minutes per client in time to print, collect the signature and file the document. Surely that can not cost more than $10,000 a year. If it was run by a government, I could see it a little higher, but not 60 times that amount.

Re:Basic math (1)

Anonymous Coward | more than 2 years ago | (#40055259)

I have to ask why written consent is going to cost the university $594,000 annually. Surely, one of their law students could draft a consent letter to be reviewed by a practicing lawyer - maybe one already on staff. That should only cost a few hundred dollars - maybe a couple of thousand if the lawyer is famous and expensive. Then there is the cost of a filing cabinet to store the letters. Maybe paper for photocopies. And Say 15 minutes per client in time to print, collect the signature and file the document. Surely that can not cost more than $10,000 a year. If it was run by a government, I could see it a little higher, but not 60 times that amount.

As written, it requires every researcher/reviewer to be enumerated in the consent form. Take the number of dna samples analyzed multiplied with the number of researchers and reviewers and that's how many consent letters you need. If you want lawyers to review the consent letters, add them into the mix.

Now, add the paper trail to every sample/study so that you send out a new consent letter anytime someone new interacts with the sample or data and you have the ridiculous costs.

While privacy is a good thing, you need to do a sanity check on these requirements. Allow people to sign off on a level of anonymity for research purposes and then it might be realistic. As written, it is not.

Re:Basic math (1)

Anonymous Coward | more than 2 years ago | (#40056045)

I was chatting with Sydney Brenner a while back about administration in science and he was recommending a "notwithstanding rule". Something to the effect that you would have a clear set of policies and procedures - but that, these policies and procedures notwithstanding, it would be possible to have reasonable exemptions.

So, with respect to the proposed law, as millions and millions of people have their genomes sequenced, there are going to be thousand and thousands of new associations found between genetic diseases and uncharacterized genes and proteins. Of course, it would be great to have a database of these associations (i.e. the existing databases are lacking in fine grained detail, to say the least) - so researchers would know which genes and proteins to prioritize for study. But, such a database might need an exemption from the proposed law.

Grow some backbone, CA (2)

Okian Warrior (537106) | more than 2 years ago | (#40055203)

The University of California has submitted a formal letter objecting to the bill, estimating that the measure could increase administrative costs by up to $594,000 annually — money which would come out of the cash-strapped state's General Fund.

So, to paraphrase: "Let's not protect peoples' rights! It will cost us money! And it will come out of the general fund! WAAAAAAH"

Gimme a break. California will *always* want more money, will always be strapped for cash, and sacrificing morality for expediency is an argument that could be used to avoid all responsibility and fairness.

Balance your budget, reduce your spending, and grow some backbone. Let your people live in privacy and safety.

Should not cost as much as they claim (2)

pesho (843750) | more than 2 years ago | (#40055307)

Research subject consent and the associated paperwork is already required by ethics rules that are strictly enforced in US. I am not aware of signal study in US that does not do that. In fact the US government and all private sponsors of research that I know of will not fund such studies. From what I see most of the law is just formalizing the status quo. The only silly thing is the requirement that only people named in the original consent from will be allowed to access the information. I am sure that this will be ironed out before the law goes into effect. Usually there is tiered access to such data that allows data that can not directly identify a person to be shared, while protecting information that can harm the privacy of the individual. My guess is that the bill is aimed against 'ancestry' web sites that also offer genetic testing and can do as they please with your genetic information according to their typical EULAs.

A far bigger concern (4, Insightful)

Grayhand (2610049) | more than 2 years ago | (#40055375)

Insurance companies would love to get their hands on this data. Got the genetic tendency for a form of cancer it doesn't matter if you never develop it your rates will go up or better yet you get canceled without notice.

Re:A far bigger concern (1)

Stan92057 (737634) | more than 2 years ago | (#40057107)

How do we know this isn't already a revenue stream for universities already?

HOMO (-1)

Anonymous Coward | more than 2 years ago | (#40055403)

Unlles you can work Lead developers

good in concept (4, Informative)

Gravis Zero (934156) | more than 2 years ago | (#40055631)

the issue here is NOT about having DNA on file, it's having DNA on file that can be associated with an individual. having tons of DNA data with a full medical history's for each sample would be super awesome for research. research doesnt need names of people, just information/associations with other real world factors. however, if you can be associated with a particular sample then there are a lot of bad guys out there (and good guys with bad ideas) that would love to get their hands on that kind of information.

i'm not ok with the government having DNA on file in a way that gives a direct association. so having DNA_Sequence=Plummer_Joe is bad. what i am ok is with them storing a hash [wikipedia.org] result using my DNA as a key. HashFunction(DNA_Sequence)=9je4H2 and Plummer_Joe=9je4H2 is ok. that way if they actually have DNA (evidence), they can look people up but they cant get DNA arbitrarily.

also, "asking" for DNA by a company should be as illegal as the whole facebook password thing. as a precaution, i'm deleting my DNA.

it's just too bad that the only thing a politician will understand about a hash is that they "didnt't inhale"

Why are we talking about research? (1)

reve_etrange (2377702) | more than 2 years ago | (#40055775)

Nearly all the posts so far are about research use of genetic information. Research data should be responsibly anonymized, but privacy standards for corporate and government (read: law enforcement) use of individuals' DNA samples should be much more strictly regulated.

I don't mind if my DNA is used for medical research, even non-anonymously, but the though of it being used by insurance companies or law enforcement is infuriating.

Click-through agreenment required for treatment (0)

Anonymous Coward | more than 2 years ago | (#40056841)

Won't hospitals and other institutions just add this authorization to their mandatory patient consent forms?

$594,000 to collect a signature? (1)

EmagGeek (574360) | more than 2 years ago | (#40058371)

Seriously? It costs 2 cents to print the consent form and a fraction of a penny for ink in a fucking pen.

There are things in life that are more important than the State running around collecting peoples' DNA without their consent for unknown and/or nefarious reasons.

This got me thinking. (1)

Anachragnome (1008495) | more than 2 years ago | (#40058601)

This got me thinking.

Is it possible, within today's legal framework, to sequence my own DNA and put it into written form then copyright that written form? After all, it IS unique. Would that protect me from people using my DNA in any manner that monetizes it, or, in effect, copies it?

And while we're on the subject... (1)

Anachragnome (1008495) | more than 2 years ago | (#40058665)

And while we're on the subject, I bring up this only for perspective sake.

http://www.govtrack.us/congress/bills/110/s1858 [govtrack.us]

I'm sure most of you will recognize the sponsor.

Anyway, read the summary. Everything we are talking about in this thread is moot. Any state level legislation would be trumped by this (think marijuana). This legislation requires the collection of DNA from every child born in the US, and that that data be posted, available freely, ON THE INTERNET.

So what the fuck is UCLA whining about?

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