Does One Size Fit All? Why Our Genes Show the Need for Tailor-Made Solutions.

Since the human genome was first sequenced in 2003, millions of consumers and medical professionals have swarmed the field of medical genetics, seeking to peer into the crystal ball and see what their own, or their patients', futures may hold. Also rushing in are direct-toconsumer genetic testing companies like 23andMe and AncestryDNA, which can circumvent medical privacy laws by offering genetic testing without a medical provider. Medical privacy regulations, such as the Health Information Portability and Accountability Act of 1996 (HIPAA), the Genetic Information Discrimination Act of 2008 (GINA), and those promulgated by the Federal Trade Commission, do not regulate these companies adequately for a litany of reasons. These loopholes and shortcomings in regulation leave American consumers substantially less protected, less medically informed, and in some instances can jeopardize national security. This Note proposes that Congress should enact legislation overhauling the current regulatory regime in at least three ways: (1) the "covered entity" approach should be abandoned and replaced with a data-driven model; (2) the Safe Harbor provision of HIPAA should explicitly exclude genomic data; and (3) consumers should be given a "right to be forgotten" and compel companies to delete their data. These reforms would significantly strengthen consumers' genetic privacy and give them an escape hatch to safeguard the core of their identity. [ABSTRACT FROM AUTHOR]

Copyright of Hastings Law Journal is the property of UC Law SF and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)