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.
Human Subjects Research
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.
Obamacare uses data for control. The Obamacare health insurance exchange is one enormous federal data sharing system. The "HUB" I discussed last week is central to data-sharing. HHS will not only peek into private data. It will prowl. Consider how government surveillance has been used in history.
The federal Food and Drug Administration (FDA) plans to make sweeping changes to federal regulations on human subjects research. In this response to the administration's request for public comments on their Advance Notice of Proposed Rulemaking, CCHF says data and DNA ownership as well as patient consent for access to and use of medical records and biospecimens collected from patients in clinics, hospitals and elsewhere is necessary.
On March 1, 2011, the Minnesota Supreme Court heard arguments on the nine-family lawsuit against the MN Dept of Health for the collection, storage, use, and dissemination of newborn DNA without the consent or knowledge of parents.
Increasingly, the specter of eugenics has emerged over State government newborn genetic screening programs. For example, The Changing Moral Focus of Newborn Screening, the December 2008 report issued by The President’s Council on Bioethics, states: “...At what point have we crossed the line from legitimate family planning to capricious and morally dubious eugenics?"
Genetic privacy, parent consent and individual self-determination rights are at stake with the U.S. Senate’s recent passage of S. 1858, the ‘Newborn Screening Saves Lives Act of 2007.’ This paper outlines five key issues of concern.