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
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.
Bearder v. State of Minnesota was brought by nine families who wanted the state to obrtain written informed consent to collect, store or use infants' blood samples. The lawsuit was spearheaded by the Citizens’ Council for Health Freedom in St Paul.
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.
Yesterday, the Minnesota Court of Appeals ruled to affirm the lower court's dismissal of the 9-parent lawsuit against the Minnesota Department of Health (MDH). The parents had challenged the collection, retention, use, and dissemination of newborn DNA by MDH as unconstitutional and in violation of the Minnesota Genetic Privacy Act.