Bill to Protect the Genetic Profiles of Californians Clears Assembly Floor – AB 170

by jeeg 4. June 2015 23:26
  A closely watched bill by Assemblyman Mike Gatto (D-Glendale) to strengthen notice requirements for the storage of newborn blood samples passed the California State Assembly by a vote of 55-9. The legislation, AB 170, will ensure parents are fully informed of their rights when it comes to ... [More]

Newborn screening collides with privacy fears

by jeeg 16. May 2015 00:59
  The wrinkled heel of nearly every baby in the United States is pricked at birth, and a few drops of blood are dabbed on filter paper and shipped off for analysis. Started in the 1960s, this newborn screening program tests for more than 30 rare and serious diseases that are treatable if cau... [More]

Protect Californian' DNA privacy

by jeeg 12. February 2015 22:15
  The recent hackings of millions of consumers’ personal information from health insurer Anthem and hospital group Community Health Systems highlight the need to maintain the privacy of individuals’ health records. So it is welcome news that Assemblyman Mike Gatto, D-Glendale, ha... [More]

CRG in the News-Millions of DNA samples stored in warehouse worry privacy advocates

by jeeg 2. February 2015 20:06
  Privacy advocates are calling for more safeguards related to a state collection of DNA samples from 16 million Californians in a nondescript government warehouse in the Bay Area. The biobank holds blood taken with the prick of a heel from almost every baby born in California for the last ... [More]

DNA privacy bill strikes right balance

by jeeg 28. January 2015 19:55
  In 1997’s futuristic “Gattaca,” one’s DNA determined one’s destiny. Released a dozen years after the beginning of real-life genetic testing, the movie tracked a man “conceived by love rather than in a lab,” as Variety put it. Because his lousy gene... [More]

U.S. House unanimously approves newborn screening bill with CRG backed privacy and consent provisions

by jeeg 11. December 2014 18:55
National newborn screening legislation is headed to President Barack Obama's desk for signature after unanimously passing the U.S. House of Representatives on Wednesday. The legislation includes new timeliness and tracking measures aimed at eliminating delays in newborn screening so babies with d... [More]

CRG Victory! Privacy and consent provisions added to Senate passed newborn screening bill

by jeeg 9. December 2014 18:40
  December 9, 2014 The U.S. Senate has passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act, after adopting significant privacy and consent protections championed by the Council for Responsible Genetics.   Every US state conducts  a newborn screening test ... [More]

Privacy Issues Stall Newborn Screening Bill

by jeeg 1. December 2014 21:55
  A bill that would support newborn screening nationwide has stalled in Congress because some Republican senators have privacy concerns about genetic research funded by the legislation. The senators won’t comment individually, but the Senate Steering Committee has indicated it wants a... [More]

States Should Secure Parental Consent Before Storing Newborn DNA

by jeeg 5. November 2014 22:40
  The U.S. Senate is preparing to vote on a bill that has a promising name but a frightening reality. The “Newborn Screening Saves Lives Reauthorization Act of 2014” (H.R. 1281) passed the House in late June and, if approved by the Senate and signed into law, would provide $99.5 ... [More]

Who’s Keeping Your Data Safe in DNA Banks?

by jeeg 26. July 2014 01:45
  Thinner than average, with serious, shadowed eyes, Kevin Anderson, 36, has worked as a filmmaker for over 10 years. He’s traveled throughout Europe and the Americas producing web and sports videos, news packages and documentary shorts. In his infancy, he was diagnosed with a rare gen... [More]
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