By Noam Biale, Advocacy Coordinator for the ACLU Technology and Liberty Program
The struggle to fortify privacy rights in America is often like the proverbial frog trying to escape from a well: two steps forward then one step back – or maybe it’s V.I. Lenin’s slightly more Sisyphean formulation: one step forward, two steps back. Case in point for the last few weeks: genetic privacy.
First, a step forward: Last week the Senate passed the Genetic Information Non-Discrimination Act, known affectionately as GINA. This important piece of legislation bars employers and health insurance companies from discriminating against applicants based on their genetic code. Scientists are rapidly identifying new predictors for disease in our DNA, yet people have been legitimately nervous about undergoing genetic testing without assurances that this information would not be used to deny them health coverage. GINA creates real, albeit limited, protections that will allow patients to seek critical medical information freely.
The fact that it took Congress more than a decade to pass this no-brainer of a bill (it passed the House 420-3 and the Senate 95-0) should not diminish the major victory that passage of GINA represents for privacy and patients’ rights. The House approved the Senate’s version today with only one dissenter (Ron Paul, if you're curious), and then the bill will go to President Bush, who has indicated he will sign it.
Now that we feel all warm and fuzzy inside, the step backwards: Less than two weeks ago, the Justice Department released proposed regulations for implementing the DNA Fingerprint Act of 2005. In addition to being a serious misnomer (I’ll explain why in a minute), this dangerous piece of legislation was never debated or given an up-or-down vote in the Congress. Instead, in a bitter, ironic twist, Sen. John Kyl (R-AZ) attached it to the otherwise laudable Violence Against Women Act (VAWA) reauthorization bill. The bill, with the DNA amendment, passed the Senate by unanimous consent, and was signed by the president on January 5, 2006.
So, why is the DNA Fingerprint Act so terrible?
First, it provides the federal government with sweeping new powers to collect and permanently retain DNA samples from anyone arrested for any crime. This could ultimately include individuals arrested for the most minor of crimes, such as peaceful protesters demonstrating on federal property, such as the National Mall or a government building.
Second, the act allows the government to collect and permanently retain DNA from any non-US person merely detained under federal authorities. "Detained" is not defined. Forget the formality of an arrest – if you are a visitor to our country you can now be compelled to give your DNA while waiting in passport control at JFK, or anytime you are pulled aside at the airport by a Transportation Security Administration agent. Thanks for visiting the United States; we’ll keep that DNA sample, thank you.
What’s so bad about including innocent people’s DNA in a criminal database?
The FBI currently warehouses DNA profiles from convicted felons in the Combined DNA Index System (CODIS), and will now begin to add profiles of innocent people into this criminal database. There are lots of reasons why including innocent people in people in a criminal database is wrong – besides the most obvious one that it turns the principle of "innocent until proven guilty" on its head. Let’s take a look at just three: the danger to privacy, the danger to civil rights, and the real problems it poses for effective law enforcement.
- Privacy. Despite the bill’s catchy title, DNA is not a fingerprint. Our genetic code contains vast amounts of sensitive medical information – the very information GINA was enacted to protect. The DNA "profile" – the set of 13 markers that is uploaded to the FBI’s database – is closer to a fingerprint. It supposedly derives from "junk" DNA that can only be used for identification purposes (though recent studies have indicated the possibility that so-called "junk" DNA, ain’t). This is cold comfort however, because the FBI is still retaining the original biological sample, and the regulations completely omit any provisions for destroying the sample once the profiles are in the database.
- Civil Rights. Adding arrestees and immigrant detainees to CODIS will ensure that the database disproportionately represents minorities, who are much more likely to be wrongly arrested or detained than whites. This week, the NYCLU released a report written by CUNY sociologist Harry Levine and attorney Deborah Small that demonstrates these dramatic disparities in marijuana possession arrests in New York City – while whites use more marijuana than blacks and Latinos, minorities are arrested for marijuana position at a rate of 8 to 1. This phenomenon is not just a local one: Bureau of Prisons statistics indicate that the same disproportionate rates exist at the federal level. Expanding the DNA databank to include even larger swaths of disproportionately represented minorities raises serious issues for civil rights and racial justice.
- Effective Law Enforcement. Some of us might be willing to make these kinds of trade-offs if a massively expanded CODIS was certain to make us safer – and, indeed, we often hear about DNA as a panacea for solving all sorts of violent crimes. The trouble is that while DNA is a proven investigative tool for certain classes of crimes, the experience of the British indicates that huge expansions of DNA databanks are not guaranteed to prevent crime, and may actually hinder investigations. In addition, the regulations estimates that under the new law, more than 1 million new samples could be added to the database a year – yet the FBI’s laboratory is currently receiving for processing only 75,000 offender samples each year. The requirement to collect, profile and upload such a massive number of DNA samples will flood the system and create huge backlogs. Such pressures on state laboratories have resulted in lab errors, falsification of data, misidentifications and convictions of innocent people.
Exacerbating these problems further, the regulations contemplate federal agencies contracting with third parties to collect and store DNA samples. Outsourcing the handling of this sensitive information to multiple collection and storage sites will almost certainly lead to abuse, the creation of "shadow databases," and error, potentially undermining public trust in DNA as an effective investigational tool.
Angry yet? Voice your outrage!
So, what are we gaining from this massive expansion of the government’s power to collect and retain our most vital, sensitive information? Frogs might be inclined to stay deep inside the well, but we should take this opportunity to speak out. The Justice Department is seeking public comments on the proposed regulations from now until May 19. You can submit comments online by following this link and clicking "add a comment." Congress failed to debate this important issue, so it’s up to us to enlighten our government about why Americans oppose the expansion of the FBI’s DNA databank to innocent people and why, when it comes to our genetic privacy, we should be taking no steps back.
Voice your opposition to this dangerous expansion of government power, by submitting your comments here. Comments are due May 19.