Wednesday, March 13, 2013

Privacy, Genetics, and Pandora’s Box

My last post, on the difficulties of regulating a malleable thing like privacy in the context of personal preferences and, especially, voluntarily giving up privacy for the greater good of medical research , takes on even greater relevance in light of this recent article in CSO about DNA hacking.

The challenges of maintaining privacy and securing identity are not a new development. Leaked search terms and de-identified marketing data have proven useful in precisely identifying individuals. Now it turns out you can be positively identified by comparing DNA samples provided by distant relatives with publicly available demographic information.

Looking into my crystal ball, I can see a response to this revelation that includes new laws and regulations aimed at layering further safeguards on personally identifiable information. Despite attempts to write protections into the Health Insurance Portability and Accountability Act (HIPAA) that would ensure the availability of data for the purposes of health research, that law still proved vexing for the medical research community.

While I am fully in favor of ensuring that individuals who do not wish to expose data related to private details of their lives have the information and tools to protect themselves, I’m also a realist. Some level of exposure of personal information is necessary in the digital age, and the government is one of the primary sources of publicly available personal data. In that regard, Pandora’s Box was opened long ago and simply cannot be closed.


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