Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All
53 Pages Posted: 6 Nov 2017 Last revised: 10 Nov 2017
Date Written: January 2, 2013
There has been a recent increase in genetic rights legislation as states have begun to grapple with the question of what rights individuals have to their genetic information. Most states have enacted legislation regulating third party use of genetic information; however, the majority of these statutes mirror the federal Genetic Information Nondiscrimination Act in that they only address health insurance companies and employers. Fifteen states have passed broader legislation that endows individuals with more comprehensive control over their genetic information. Of these states, five provide individuals with a property interest in their genetic data and ten grant a privacy interest. This article argues that the laws are so broadly written that they may become unworkable in practice and therefore will fail to adequately protect individuals and their genetic interests. State legislatures would benefit from a narrowly-tailored model law that addresses individuals’ concerns. Additionally, states should create regulations for areas such as newborn screening, paternity testing, and law enforcement biobanks to ensure full protection for individuals in all situations.
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