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Private Ownership of Genetic Data May Undermine Diagnoses

A European health organization has publicly castigated an American genetics company for keeping large swaths of genetic data private, perhaps delaying the advent of personalized medicine. 

What’s the Latest Development?

The European Society of Human Genetics is crying foul over an American company’s insistence at keeping large stores of genetic information private. The company, Myriad Genetics, does not share the data it has amassed on variants of unknown significance (VUS) with public institutions. “By not sharing their data on the VUS obtained from individuals undergoing BRCA1/2 testing, where Myriad is the sole commercial provider of a test in the U.S., geneticists have been unable to develop the up-to-date algorithms that are necessary to best interpret the effects of genetic variants.”

What’s the Big Idea?

The European organization argues that while Myriad currently benefits from data made public by government institutions, that relationship is not reciprocal, and without sharing data, the company may find it more difficult gaining access to European markets. “It is vital that progress towards personalized medicine, which holds out so much promise, is not hindered by companies maintaining private genomic databases,” said the organization. The VUS that may be found in an individual’s genome may be used to provide proper genetic counselling and if necessary, preventive or therapeutic guidance.

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