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DNA Privacy: Pressing Concern and Political Rallying Point |
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< | -- By CharlesRice - DRAFT 2 |
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> | -- By CharlesRice - DRAFT 3 |
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Introduction |
| | For now, there are legal and scientific barriers to cloning and DNA experimentation; once sequenced, however, DNA information can be stored indefinitely. The diffusion of gene-editing technology also means that nearly anyone can “hack DNA.” CRISPR offers a mail-order gene-editing kit for only $169. This combination should raise dystopian shivers. We can officially start worrying about someone cloning us in their basement someday. |
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< | The experience of Henrietta Lacks suggests that gaps in the protection of our genetic data will be exploited. We’ll have to hope the protections against are improved upon rather than weakened over time. This will not be achieved without proactive change; experts have described the current U.S. legal regime as imposing “no limitations” on future uses of DNA data. |
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> | Henrietta Lacks' story suggests that gaps in the protection of our genetic data will be exploited. We’ll have to hope that safeguards are improved upon rather than weakened over time. This will not be achieved without proactive change; experts have described the current U.S. legal regime as imposing “no limitations” on future uses of DNA data. |
| | Bootstrapping Political Will |
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< | Most people fail to understand why the data they share through their phones, computers, and other connected devices present such a dire threat to their privacy and autonomy. It’s much easier to understand—and subsequently build a coalition to combat— the potential risk of unfettered access to (and use of) our DNA. GINA was passed in 2008 with near unanimous support. Recently, DTC genetic testing companies have seen a significant slowdown in new tests; some experts attribute this to rising fears around genetic privacy. |
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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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< | Concurrently, a few genetic testing companies have adopted business models that 1) grant participants sole ownership and control of their data, and 2) enable them to sell that data anonymously. The profits are relatively small, but by granting individuals control over their data, potential buyers are incentivized to treat that data with care. This also adds to the political coalition around genetic privacy. |
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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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< | Political agreement on protections for genetic data (which appears possible) would be a victory in the arena of genetic privacy. Perhaps more importantly, it offers an opportunity to draw attention to the broader conversation around technology, privacy, and informed control of our most sensitive personal data.
An informative draft, presenting coherently the material on which more than the present rather weak conclusion could be based. The route to improvement is to focus the next draft on your own idea, the one the essay is intended to communicate, which I think goes beyond the perception that people have slight understanding of the uses of their genetic data.
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> | 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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You are entitled to restrict access to your paper if you want to. But we all derive immense benefit from reading one another's work, and I hope you won't feel the need unless the subject matter is personal and its disclosure would be harmful or undesirable. |