Seeking a "Race to the Top" in Genomic Cloud Privacy?
نویسندگان
چکیده
The relationship between data-privacy lawmakers and genomics researchers may have gotten off on the wrong foot. Critics of protectionism in the current laws advocate that we abandon the existing paradigm, which was formulated in an entirely different medical research context. Genomic research no longer requires physically risky interventions that directly affect participants’ integrity. But to simply strip away these protections for the benefit of research projects neglects not only new concerns about data privacy, but also broader interests that research participants have in the research process. Protectionism and privacy should not be treated as unwelcome anachronisms. We should instead seek to develop an updated, positive framework for data privacy and participant participation and collective autonomy. It is beginning to become possible to imagine this new framework, by reflecting on new developments in genomics and bioinformatics, such as secure remote processing, data commons, and health data co-operatives.
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