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HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights.

December 12, 2018 dna 0
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HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights.

Am J Hum Genet. 2018 01 04;102(1):5-10

Authors: Evans BJ

Abstract
In 2014, the United States granted individuals a right of access to their own laboratory test results, including genomic data. Many observers feel that this right is in tension with regulatory and bioethical standards designed to protect the safety of people who undergo genomic testing. This commentary attributes this tension to growing pains within an expanding federal regulatory program for genetic and genomic testing. The Genetic Information Nondiscrimination Act of 2008 expanded the regulatory agenda to encompass civil rights and consumer safety. The individual access right, as it applies to genomic data, is best understood as a civil-rights regulation. Competing regulatory objectives-safety and civil rights-were not successfully integrated during the initial rollout of genomic civil-rights regulations after 2008. Federal law clarifies how to prioritize safety and civil rights when the two come into conflict, although with careful policy design, the two need not collide. This commentary opens a dialog about possible solutions to advance safety and civil rights together.

PMID: 29304376 [PubMed – indexed for MEDLINE]

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Scientists design way to track steps of cells’ development

December 12, 2018 dna 0
Scientists have developed a new tool described as a ‘flight data recorder’ for developing cells, illuminating the paths cells take as they progress from one type to another. This cellular tracking device could one day help scientists guide cells along the right paths to regenerate certain tissues or organs, or help researchers understand the wrong turns some cells might take on their way to becoming cancerous.