Genetics

CCH Freedom Says Minnesota on Precipice of Repealing Genetic Privacy

50-State Report Unveiled; States Track Medical Data from Birth to Death Without 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.

Angelina Jolie’s Genetically Modified Body

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.

MN Dept. of Health Registries

This is a list of all the data the MN Department of Health collects and how they use it.

'Biobank' bill threatens genetic privacy

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! 

Without Consent - "Genetic Grab" List from MDH

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

Twila Speaking at DNA BioBank Press Conference

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.

Patient Medical Privacy

NATURE Magazine Discusses CCHF's Baby DNA Efforts

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.

Human Subjects Research - Major Revision Planned

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.