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.

"It's becoming easier and quicker and cheaper for people to obtain their genetic profile or genetic information," says the bill's author, California state Senator Alex Padilla. "It's such sensitive and personal information that it ought to be protected," he says. Padilla also authored an earlier bill, enacted in January, which extended federal protections against genetic discrimination.

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.

Such requirements could seriously hinder genomic research, says geneticist David Segal, associate director of genomics at the University of California, Davis. He points out that scientists typically sequence DNA from thousands of people to discover genes associated with particular diseases. Under the proposed legislation, a large genomic dataset could not be re-used to study a different disease. Researchers would either need to destroy the data after each study, or track down thousands of former subjects for new authorizations—an infeasible task, he says.

"It's just an incredible proposition that the money and effort that would be spent to obtain those large datasets would be just thrown away," Segal adds. "California would be shut out of doing that kind of genetic research."

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.

Advocates for genetic privacy are not entirely sympathetic.

"If researchers are worried about not being able to do research with inadequate consent, then maybe they should be worried," says Jeremy Gruber, president of the Council for Responsible Genetics based in Cambridge, Massachusetts, which supports the bill.  "Nothing in this bill prevents anybody from doing research, it simply adds a level of consent," Gruber says.

Segal says that University of California policies governing human research already require informed consent for research using genomic data and typically require genetic information to be identified with numbers instead of subjects' names. But the new bill would require authorization for re-use of even anonymous data.

"My intent is not to impede research; my intent is to protect consumers," says Padilla. He notes that some research subjects may not want their data stored and re-used in other experiments. "That's one of the gaps we're trying to close," he says.

Constructive feedback

Many states do not have laws governing surreptitious genetic testing, and those that do vary widely in their restrictions, according to a 2009 report by the Genetics and Public Policy Center. In 2006, Minnesota passed a law that requires written consent for collection, storage, use, and sharing of genetic information. In the November 2011 decision of Bearder v. State of Minnesota, the Minnesota Supreme Court found the state's own department of health in violation of the law for keeping blood samples routinely used to screen newborns for serious illnesses and, in some cases, using the samples to validate new genetic tests.

11 Comments

1. 1. Bops 11:36 PM 5/20/12

   The benefits of DNA research far out weight any personal issues.
   
   Better genes, better life, would anyone honestly choose to be less?
   
   I'm more concerned about killer robots and smarter than people computers, than people with better DNA.
   
   

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2. 2. Steve926 01:29 AM 5/21/12

   What about law enforcement agencies? They keep your DNA on file even if it rules out a crime. Its not just a form of ID like a finger print, It's our supposedly protected medical history.

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3. 3. Percival 01:47 AM 5/21/12

   I wonder whose DNA was used for the so-called human DNA Project(s). Surely a wider sample would only improve its utility.
   
   On the other hand, Bops, when your insurance company obtains your genome from a public database, and finds you subject to some disease you never heard of, and refuses you life insurance past say age 50, you'll be OK with that?
   
   In case you think there'll be no public databases with identifying info attached in your vision of the perfect future, sorry, Steve926 is right. Such databases exist right now and are not very well secured. Ever been arrested? In the military? Applied for many types of job that require blood sampling/testing? Ever gave blood samples to your doctor?
   
   There already *is* no such thing as DNA privacy. It's just not as obvious as many think, and it's only going to get worse.
   
   Wait till some corporation patents a stretch of *your* DNA for their profit.

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4. 4. MarkB4 04:56 AM 5/22/12

   Anything that's done without the knowledge and 'informed' consent and control of the individuals concerned will inevitably be abused.
   
   Human nature 101.
   
   I think there are good people who want the best for the rest and fight for it but I wonder if they are enough to tip the scales. Sure doesn't look like it but every bit counts.

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5. 5. glynn 02:24 PM 5/22/12

   Large companies will easily be able to handle the $1000 fine for any legitimate or nefarious purposes. the pay back could be enormous.

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6. 6. EyesWideOpen 04:41 PM 5/22/12

   Personal DNA is every citizen's future social security number that will identify them uniquely, determining whether they may buy and sell, get employment, get approved for health insurance, whether they were present at a geographic locale or at a crime scene.
   
   Case in point analogously: "A new bill, if passed, called the Economic Reform Act, would track spending and lending trends (anonymously) using identifiers such as credit card numbers and even social security numbers, considered a threat to individual privacy. Institutions like U.C. Los Angeles argue it will impede their government funded research on reforming the cancer of economic stagflation caused by the second ‘Great Depression II’ of 2033, but privacy advocates warn it will allow private interests to potentially hack in to systems and collate this 'anonymous' data with indexes of real credit card and social security number holders."
   
   Translation: Privacy advocates are concerned private interests could potentially hack in to anonymous genome databases used by researchers. Like taking an encoded FBI fingerprint database, new quantum computing capabilities could allow the creation of rogue databases that live in perpetuity, and collation of DNA in these database with DNA found anywhere from residential garbage cans (probably starting with important celebrities, politicians, and heads of state) or other public areas. Researchers say this is pure paranoia. Just because this can be done with an FBI coded fingerprint database, does not mean anyone is smart enough or devious enough to use this method on DNA databases, some will likely argue. “Why would anyone in their right mind do such a thing? Research trumps personal privacy even if there is some credence to this rather incredible hypothesis,” argued Dr. Gwen Scott in an interview at Times Square on New Years Eve of 2035. Dr. Scott received her Ph.D. in Quantum Computing at U.C. Los Angeles in 2027, and is spearheading a project to collect over 7 billion anonymous DNA profiles for use in finding cures to cancer and other diseases plaguing mankind for millenniums. “Ok, let’s set these naysayers are right. Would you rather have a world where disease was a thing of the past, or a world where everyone has so-called ‘rights’ at the expense of their health?” Dr. Scott commented before cutting short the interview.
   

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7. 7. jgrosay 05:40 PM 5/22/12

   There were already rules and laws about general issues of privacy and protection of personal data, that for example are more strict in Europe than in the USA, but one has the feeling that issuing a new rule every time a new tipe of personal data susceptible of abuse and in need of protection is discovered sounds as a waste of time, and also of the taxpayer's money that would go in an even greater amount to lawyers and lawmakers. If a general regulatory body for confidential data is set, this good general regulatory body about personnal data would be enough, thus avoiding things such as the rules for drugs of abuse, forbidden drugs constitute a positive list, and anything not specifically listed is considered initially as legal until written in the list of dangerous products, a way of issuing rules that has stimulated drug traffickers to hire experts in chemistry to syhthesize new molecules that do make people high, but are not included in the existing lists, the substitute of heroin that produced many cases of a Parkinson's disease-like condition was an example of this. Laws are better if on general issues, things that may modify the typification of a crime or the responsibility of the offender are one of the reasons why for the institution of judges, if you include this modifying circumstances in the wording of every law, even in a frame of common law as in the USA, you build an enormous, silly and nearly impossible to handle legal body, that may even act as a rationale permitting or stimulating some crimes, as the Venezuela's rules about poor people being allowed to steal. The general definition of situations such as a state of necessity don't need being individually written in every definition of something considered a crime or an offense.

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8. 8. jcvillar 09:35 PM 5/22/12

   This is an Orwellian no-brainer. OF COURSE no one's DNA should be profiled without their consent.

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9. 9. EyesWideOpen 11:37 PM 5/22/12

   Well it's good to see someone actually passed Logic 101 in school, and can see how DNA our most personal asset, kinda like there's only one Mona Lisa hanging in Paris. Unless master forgers are allowed to borrow her to scan her with lab equipment, a necessary first step to making a perfect reproduction that is perfect to the nano-scale. Then connect the dots, kinda like knowing one can lose their civil rights for a time if they post their social security number on Facebook, or give it to Mrs. Monaghan of Dubai to help her transfer $10M into your bank account as a "gift" she wishes to bequeath you -- at least losing those rights for all practical purposes until your attorneys (hopefully) prevail for you.
   
   But oh, that's right, they want a law that supersedes your civil rights. Researchers can use SS#'s, CC#'s and bank acct numbers anonymously without the consent (for altruistic purposes only) if you name is not attached. Then if a corporation hires Joe Hacker to steal that database and voila! They can collate it until the attach names to every "anonymous" transaction.
   
   But strike that previous paragraph, I'm getting ahead of myself. Forgot that first, using DNA without consent must be legalized to set the precedent necessary to effect the previous paragraph. As they say, in strip poker the blouse must precede the bra.

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10. 10. bucketofsquid 01:07 PM 5/23/12

    Is your DNA private? You shed cells constantly and leave them everywhere you go. Should we call that littering? Wouldn't it make more sense to limit what DNA can be used for rather than making a blanket absolute "NO"?
    
    I have yet to see a valid reason for the govt. not to be able to store DNA profiles. It helps identify criminals, tracks disease patterns and helps in research. Prohibit the use of DNA by insurance companies or better yet, nationalize health care like all of the other civilized countries do. As for the banks and marketers, they already spy on you constantly so either always use cash or get over the delusion of privacy from these predators.
    
    Allow the option for multiple use cases for DNA. I would love to have a detailed DNA profile for myself and would gladly make it available for free to any health researchers for ever. I am not prone to criminal behavior (aside from sounding a little psychotic when discussing politics) so I have no issue with law enforcement storing my DNA. Conversely, I don't want Homeland Security having it because that apparatus is just begging for it to be abused by evil people.
    
    We manage to have laws limiting where cars can go so why not limits in where DNA can be stored?

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11. 11. EyesWideOpen 02:17 PM 5/23/12

    You're right, a corporation's stooges could surriptitiously follow you to a public place and gather your DNA for their own self-serving use cases. They could even clone you without your consent, and have your clone assassinate the President of the United States -- you only finding out on CNN as you hear a banging on your front door with shouts of "Armed Police, open the door!" and before you can grab a robe, "Ok, break it down guys." Battering ram. Fade to black.
    
    However, by controlling your own DNA as you control your vital organs (and choose to donate them to an organ bank, or not), you can control your DNA and stipulate precisely how it is used. In that case, at least your attorney has something. Whereas, if she asks you (assuming it's the year 2050) "It sounds like the hit was by a clone from your stolen DNA. There was a case a few years ago where the CEO of ATT was shot point blank in his office by what proved to be a clone of the Board of Directors whom they framed. DID YOU AT ANY TIME RELINQUISH CONTROL OF YOUR DNA?"
    
    "Ms. Roberts," you say slowly as you stare her in the eyes through a one inch bullet proof glass prison window, "I don't 'control' my DNA. A detailed DNA profile for myself is available to whomever wishes to use it, and I gladly made it available for free to any health researchers for ever. I am not prone to criminal behavior (aside from sounding a little psychotic when discussing politics)! I did not assassinate the President of the United States at my place of employment at the Ritz Carleton! I have no issue with law enforcement storing my DNA. Conversely, I don't want Homeland Security having it because that apparatus is just begging for it to be abused by evil people."
    
    "Well," your attorney says as she gathers her purse and prepares to leave, "Homeland Security has it, along with the FBI, Pentagon, Justice Department, and everybody else. The general consensus is you are the 'evil' one. Based on what you just said, it's going to make defending you exponentially complex, but my firm has handled even terrorists. Tell me, as your attorney with Client/Attorney privilege, Did you assassinate the President of the United States at the Ritz Carleton during your evening shift? Be truthful or I cannot defend you let alone make a case your DNA was misappropriated."

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