Mining the human genome after Association for Molecular Pathology v. Myriad Genetics

Genetics in Medicine : Official Journal of the American College of Medical Genetics
Barbara J Evans

Abstract

The Supreme Court's recent decision in Association for Molecular Pathology v. Myriad Genetics portrays the human genome as a product of nature. This frames medical genetics as an extractive industry that mines a natural resource to produce valuable goods and services. Natural resource law offers insights into problems medical geneticists can expect after this decision and suggests possible solutions. Increased competition among clinical laboratories offers various benefits but threatens to increase fragmentation of genetic data resources, potentially causing waste in the form of lost opportunities to discover the clinical significance of particular gene variants. The solution lies in addressing legal barriers to appropriate data sharing. Sustainable discovery in the field of medical genetics can best be achieved through voluntary data sharing rather than command-and-control tactics, but voluntary mechanisms must be conceived broadly to include market-based approaches as well as donative and publicly funded data commons. The recently revised Health Insurance Portability and Accountability Act Privacy Rule offers an improved--but still imperfect--framework for market-oriented data sharing. This article explores strategies for add...Continue Reading

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Citations

Oct 10, 2014·Nature Biotechnology·Margaret A CurnutteDavid J Kaufman
May 13, 2017·Science·Christi J GuerriniMary A Majumder
Dec 21, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Kalina KamenovaTimothy Caulfield
Mar 23, 2019·Prenatal Diagnosis·Naomi HawkinsRobert Cook-Deegan
Feb 6, 2016·Nature Biotechnology·Christi J GuerriniAmy L McGuire
Apr 8, 2015·Nature Biotechnology·Johnathon LiddicoatDianne Nicol
Apr 14, 2019·Occupational and Environmental Medicine·Lee S FriedmanRobert A Cohen
Dec 24, 2018·Journal of the American Medical Informatics Association : JAMIA·Barbara J Evans, Harlan M Krumholz
May 26, 2017·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Mary A MajumderAmy L McGuire

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