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Alabama's GINA

Alabama may soon join the club of US states that have laws to guarantee the privacy of their citizens' genetic information, report Dan Vorhaus and Jennifer Wagner at the Genomics Law Report. Following legislation passed in California, Vermont, and Massachusetts, Alabama's House of Representatives is debating a bill that would, among other things, "require signature on separate informed consent documents to obtain, retain, or disclose genetic information," Vorhaus and Wagner write. The bill would also make it illegal to surreptitiously collect DNA from anyone for the purposes of genetic analysis, and makes DNA samples and any genetic information obtained from those samples the exclusive property of the person from whom the samples came.

The Alabama bill — and others similar to it — show that there is more leadership needed on the issue of genomic privacy, Wagner and Vorhaus add. "The need for leadership extends beyond agencies like the FDA and NIH to the world stage, where international policy leadership is an increasingly urgent need," they write. "Personal genomics is and should be a global undertaking and, in that context, consistent federal-level oversight that conflicts with what is happening in Europe and elsewhere is ultimately little better than the ambiguous and inconsistent state-level laws under consideration in Alabama and elsewhere."

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