Distributing the future: The weak justifications for keeping human genomic databases secret and the challenges and opportunities in reverse engineering them

Misha Angrist ^a^,^,,
Robert Cook-Deegan ^b^,^,

DOI: 10.1016/j.atg.2014.09.005

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“The future is already here — it's just not very evenly distributed.”
— William Gibson

1. So sue me

Myriad Genetics, founded in 1991 as a spin-off from the cancer genetics epidemiology unit at the University of Utah and initially funded in part by public money, went on to build a multi-billion-dollar business by discovering and patenting two genes that, when mutated, predispose to hereditary breast and ovarian cancer (HBOC) (Williams-Jones, 2002 and Allison, 2014). While Myriad's reputation as a competent test provider was generally exemplary and there was no apparent price premium attributable to the patents, the company's monopoly on the two genes kept patients from obtaining second opinions or confirmatory testing. Moreover, researchers were prevented from returning results on the two genes to research participants (Carbone et al., 2010 and Cook-Deegan et al., 2010). In 2009 the American Civil Liberties Union sponsored litigation against Myriad on behalf of twenty plaintiffs (including HBOC patients), seeking to overturn Myriad's US service monopoly on genetic testing for HBOC. In 2013 the United States Supreme Court ruled that genomic DNA was a product of nature and therefore not patentable (Association for Molecular Pathology et al., 2013), while engineered DNA molecules were eligible to patent. Almost immediately, a spate of other genetic testing firms announced that they would begin testing for the two genes, BRCA1 and BRCA2, that were once the exclusive province of Myriad ( Karow, 2013).