ST. PAUL, Minn.—The U.S. Senate last night passed an Amendment to the “Newborn Screening Saves Lives Reauthorization Act of 2014” (H.R. 1281) that will take a necessary step to protect babies’ private genetic data and ensure that parents are informed about their newborn’s screening blood spots and how they will be used.
Don’t Allow Government to Collect and Store Genetic Blueprint of America’s Citizens
ST. PAUL, Minn.—In the current lame duck session of Congress, which began last Wednesday, Senators and Representatives will be on a fast-and-furious mission to clear leftover business and push through the last remaining bills before newly elected lawmakers take office in January.
ST. PAUL, Minn.—The U.S. House of Representatives will vote on Tuesday on the Newborn Screening Saves Lives Reauthorization Act of 2014 (H.R.1281), which would extend for five years the funding program that allows states to collect and store newborn DNA without parental consent.
Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) released the following statement after the Minnesota State House voted 69-58 yesterday to repeal genetic privacy for newborns and allow the state to collect and store newborn DNA without parental consent.
Today, Citizens’ Council for Health Freedom is releasing the findings of one of its most important works to date. For the past eight years, CCHF has been researching health departments in all 50 states to find out how they use funding from the federal government to obtain and store citizens’ private medical information—in most cases, without patients’ consent.
How do you feel about Angelina Jolie's decision? On Monday, The New York Times published her opinion piece called, "My Medical Choice." Angelina, the popular 37-year-old actress, chose to have a double mastectomy. After three months of medical procedures to remove her breasts and perform reconstructive surgery with implants, she wrote about her prophylactic decision.
This is a list of all the data the MN Department of Health collects and how they use it.
CCHF President, Twila Brase, was published in the Pioneer Press on April 17, 2013 regarding legislation in the Minnesota House and Senate that would grant authority for DNA and personal medical information to be collected, stored and used for research WITHOUT individual consent. It has now been APPROVED by the Senate but still will need to be heard by the House before it can go to the Governor. Protect your Privacy! Sign the NoBiobank petition!
Four months into the legislative session, and after many requests, the Minnesota Department of Health has provided the state legislature with a list of all the genetic information (biological specimens and health data) that they have been collecting, using, storing and disseminating without legislative authority or individual written consent -- as required by the Minnesota Genetic Privacy Act (M.S. 13.386). The list was provided shortly before a floor vote on April 18 to give MDH retrospective legal protection against MGPA violation lawsuits as well as prospective authority to collect, store, use and share any and all genetic information on individuals without the individual's consent, long into the future.
The FIRST PAGE includes data that the statutes allow. The SECOND AND THIRD page is DNA and data they've collected and used by making up their own rules. There may be a statute listed, but it doesn't give them express authority to do what they've been doing in violation of the law. HF 695 and SF 745 will protect them from lawsuits forever...and give MDH ownership claims to the DNA of citizens. PETITION: http://bit.ly/SayNoDNABiobank