Law in the Internet Society

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CharlesRiceSecondEssay 5 - 07 Jan 2021 - Main.CharlesRice
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 The DNA privacy movement should be tied to the broader data privacy rights agenda to catalyze a paradigmatic change in the treatment of personal data and individual sovereignty over their most sensitive information. Doing so would amplify consumer education, empowerment, and political action.
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<		The threats posed by inadequate DNA privacy have driven changes in individual decision making in a way that the risks of sharing of more “mundane” data from phones, computers, and other connected devices have not. DTC genetic testing companies have seen a significant slowdown in new tests amidst fears around genetic privacy. This consumer demand has spawned genetic testing companies with business models that grant participants sole ownership and control of their data and enables them to sell that data anonymously. This should offer lessons for Americans who feel helpless in controlling their data privacy—the decisions of informed consumers can drive change.
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>		The threats posed by inadequate DNA privacy have driven changes in individual decision making in a way that the risks of sharing of more “mundane” data from phones, computers, and other connected devices have not. DTC genetic testing companies have seen a significant slowdown in new tests amidst fears around genetic privacy. This consumer demand has spawned genetic testing companies with business models that grant participants sole ownership and control of their data and enables them to sell that data anonymously. This should offer lessons for Americans who feel helpless in controlling their data privacy—the decisions of informed consumers can motivate change.
 There appears to be an appetite for political agreement on genetic data protections, but these conversations should be linked to larger legislative gaps around health and data privacy. The main law protecting health data (HIPPA) is recognized as being outdated and obsolete in the face of modern technology. Its replacement should link health and genetic data to comprehensive privacy reform in the spirit of the GDPR.


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