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.
Human Subjects Research
Federal officials are defending an unconscionable act. Between 2005 and 2009, the National Institutes of Health (NIH) supported research on 1,316 premature newborns without requiring parents to be told their baby could die and the baby’s oxygen monitor would not show their child’s true oxygen level.
ST. PAUL, Minn.—As schoolchildren in Florida prepare for the exciting end of the year, their parents can celebrate a victory and breathe a sigh of relief, too.
Governor Mark Dayton Signs Bill Repealing Parental Consent, Genetic Privacy Rights for Newborn Babies
ST. PAUL, Minn.—The start of 2014 marks a victory for the protection of private genetic data with the settlement of a lawsuit between 21 Minnesota families and the Minnesota Department of Health. The multi-year case argued the illegal and improper storage and use of newborn blood samples and genetic test results obtained under the Newborn Screening Program by the state health department. The ruling is in favor of the 21 plaintiffs, and now the blood samples and test results obtained without consent must be destroyed.
ST. PAUL, Minn.—This past Saturday was supposed to mark the first day that baby genetic test result destruction was to begin in Minnesota, marking a historic victory for the protection of private medical information and genetic privacy.
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.
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!
On April 10, 2013, CCHF Presidenta Twila Brase spoke at a press conference hosted by Rep. Peggy Scott opposing the creation of a DNA BioBank by the state of Minnesota. She was joined Dr. Michelle Goodwin, a Bioethics professor from the U of M, and several other members of the MN House and Senate.