ST. PAUL, Minn.—Politico is reporting today that a little-talked about section of the House-passed 21st Century Cures Act (H.R.6) appears dead in the Senate. The House language would allow “HIPAA-protected information to be shared with researchers.”
Human Subjects Research
Citizens' Council for Health Freedom would like to underscore the importance of the proposed
"human subject" designation of biospecimens, including newborn DNA. We support this designation, which is currently in law for newborn dried blood spots (Newborn DNA) under the Newborn Screening Saves Lives Reauthorizaiton Act of 2014.
ST. PAUL, Minn.—Electronic Health Records (EHRs) have changed the medical profession—for the worse, says Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), a national organization dedicated to preserving patient-centered health care and protecting patient and privacy rights.
ST. PAUL, Minn.—Health care is an always-moving, always-changing entity, with new developments every day—some of which compromise patients’ private medical information, as well as the care their doctors can offer them.
A bill moving quickly in Congress will authorize millions of corporate and government outsiders to have access to private patient records for analysis and research without patient consent. The U.S. House Energy and Commerce (E&C) Committee will vote the week of May 18, 2015 on the 21st Century Cures Act, authored by Chairman Fred Upton (R-MI). To protect your privacy and your health freedom and for a list of members to call in Congress, click Read More!
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.
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.