Nothing Left to Hide: The Danger of DNA Databases

In an age where companies and governments know more about us than we do ourselves, the last frontier in this loss of privacy is access to our DNA. While we may be far from the imagined future depicted in Gattaca, the wealth of known information stored in DNA continues to expand as science progresses. DNA carries information about physical appearances, susceptibility to physical and psychological diseases, mental predispositions, obesity, longevity of life, etc. This information would obviously be valuable to pharmaceutical and life insurance companies, but could also be used in new forms of discrimination based on new definitions of race, ethnicity and personhood . In the last two weeks, two conflicting events have occurred regarding the collection and storage of our DNA, which serve to highlight the need to limit both government’s and private companies’ ability to collect, store, and sell DNA information.

On December 4th, the European Court of Human Rights in Strasbourg found that keeping DNA records of people with no criminal convictions breached article eight of the Human Rights Convention, a ruling which would lead to the destruction of 200,000 DNA samples collected from 2001 through 2005. The ruling came after a recent revelation that the British government had given millions of DNA profiles from this database to private companies for the development of DNA analytical software . Failing to follow suit, a week later the U.S. Justice Department published new regulations allowing it to collect and store DNA samples from all people arrested for federal crimes, as well as immigration detainees, regardless of conviction – a move which could add 1.2 million people a year to the national database. The Justice Department tried to downplay the move, characterizing DNA as an identification method equivalent with fingerprints , as if grooves in our fingers are just as important as the blueprint behind our entire genetic make-up.

The probable cause requirements to be arrested is not, however, the threshold that is needed for the government to collect and catalogue your DNA. The Washington Supreme Court upheld a conviction based on a DNA sample lifted from an envelope that was fraudulently obtained by police officers posing as a fake law firm . Perhaps more frightening, and mirroring our in-class conversations that with enough outside information things can be inferred about you, the LAPD wants to begin to search DNA databases with new software that targets familial matches. If you want to stay off the DNA grid, you’ll need to take your whole family with you.

However, maybe the largest specter in the collection of everyone’s DNA isn’t Big Brother, but is really ourselves. In a society where people happily post their entire lives on social networking sites, conduct and store their online correspondence with Google as well as manage their finances online with Quicken , it shouldn’t be surprising that people are happy to send away their DNA information for pop science, or at least currently undeveloped science. With the increased technological ease of DNA collection , a whole market has grown up around direct consumer DNA tests. Whether it’s testing one’s geographic ancestry, how closely related someone is to a famous historical figure, paternity tests, or predictive health problems , there are dozens of pseudo-science tests that result in people voluntarily offering up their DNA. Just as our consumer spending information and personal information is sold back and forth among companies once we put it into the open, one must wonder the fate of this genetic information. It’s doubtful that people are much more protective of their DNA than they are their credit card number or that they spend much time reading the contractual terms outlining the fate of their DNA submissions.

However, even if you think that it’s a person’s own prerogative to give away their DNA for the price of being told they are related to Oprah or hail from a specific biblical tribe, this decision is often made for them before they become old enough to consent (or not). Parents have begun sending in their children’s DNA to predict sports abilities , as well as creating DNA profiles for their children in case their children are ever kidnapped. Beyond over-protective and over-intrusive parents, in early 2008 President Bush pushed signed the Newborn Screening Saves Lives Act of 2007 , which created a committee to provide, and likely extend, guidelines on how states should regulate how long blood samples of newborns should be stored . Although this newborn blood storage has yet to be used to collect DNA profiles on citizens, the existence of such capabilities seems dangerous, especially in a political environment where the erosion of civil liberties is often justified by necessity.

As more information is learned about DNA and genome sequencing, the problems of regulating DNA databases becomes more acute. The need to increase the burden of proof necessary for the government to collect and store people’s DNA is pretty straightforward. There has also already been progress made on outlawing genetic discrimination. However, the greater danger may reside with the general lack of expectation of privacy that currently prevails within the internet generation, coupled with the innumerable avenues online for people to volunteer their and their families’ DNA.

If the specter of DNA storage and lack of privacy fails to resonate with people, I don’t see anyway to stop this spread of DNA information without outlawing private companies from storing and transferring genetic information. Allowing property rights over one’s own DNA, or at least having the ability to prevent its distribution, or having assumed opt-out clauses for allowing companies to keep one’s DNA, or more clear notice requirements -- all seem ineffective if people don’t care about the privacy of their DNA. One could argue that its people’s right not to care and give this information away freely. However, as Professor Moglen noted in class, in the age beyond forgetting and beyond anonymity, while giving away DNA now may seem like no big deal, as more things become discoverable from DNA as science progresses, it will be too late to put the jack back into the box.

-- AdamCohen - 16 Dec 2008

Excellent expose, Adam. I wonder though if you are not too quick in dismissing property rights over one's own DNA as a potential limitation on some of the worst abuses that could grow out our blase attitude (as a society) towards giving away privacy information.

Like you, I suspect that people will continue to be entirely too willing to give away their DNA up until the point where the information it contains is used against them. While it may certainly be too late at that point to roll back the clock in some situations, would a property-like right over DNA not help someone whose DNA was given away as a child seek to have the sample destroyed as an older, wiser adult?

Or do you think that once digitized, the data about you contained in your DNA is the proverbial genie that can't be put back in the bottle?

-- AndreiVoinigescu - 17 Dec 2008

Giving property rights over DNA seems like a weak solution. How does that protect a report listing your entire gene sequence "ACTGAC..."? Where do you draw the line between property and speech? Is property really the regime we want to go to? That's worked so well in patents and copyrights...

-- KateVershov - 17 Dec 2008

I'm not sure I understand the threat the allowing your DNA to be publicly known is? Is there concern that healthcare risks for those genetically at risk for certain diseases will be higher? That doesn't seem entirely unfair. Don't insurance rates already vary based on family history and age (both things you can't control but that have an impact on the cost of your possible care).

-- HamiltonFalk - 18 Dec 2008

Predisposition to certain medical conditions is just the tip of the iceberg. Check out the short article behind the "discrimination based on new definitions of race, ethnicity and personhood" link. While DNA might identify legitimate proclivities towards behavior, DNA is likely to be a very weak predictor at best for the complex social behavior we're usually interested in -- thinks like proclivity to violence, or pedophilia, or laziness, say. But just because DNA isn't a very good predictor of behavior doesn't mean people won't give it more weight in their decisions than it deserves.

-- AndreiVoinigescu - 18 Dec 2008