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Frogs for Genetic Privacy

by ACLU

Thu May 01, 2008 at 11:51:41 AM PDT

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.

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