04.

Bio Data Privacy 

We believe your genetic data should be subject to the same protections as any other medical information.
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SAFEGUARDING YOUR DNA

SUMMARY

Companies like 23 and Me have monetized US consumers’ genetic data to the tune of over $300M a year. Because these data are not considered to be covered by HIPAA, they are sold and traded in much the same way that other consumer data gathered by social media are. However, these data are special because they can be used by the private sector for a multitude of purposes, including discriminatory insurance purposes. 


Biodata privacy should be protected as its own class of information, and its use should be covered under mandated informed consent legislation. Federal regulations outlining informed consent, as recent as 2002, grew out of ethical guidelines established by the Belmont Report. Informed consent requires the disclosure of what the participant is giving, and getting, in a manner that is focused, organized, understandable, and reasonably comprehensive. Genetic data is tantamount to health data and deserves to be treated in a similar manner, and consumers have a right to know that they are paying to give away their own privacy. We propose that companies collecting American genomic information must enact and enforce informed consent practices at the same level that are expected of all health science researchers.

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