Human Subjects Research

NewSettlement Reached in Minnesota Case 
of Baby DNA Stored Without Consent

Settlement Reached in Minnesota Case 
of Baby DNA Stored Without Consent

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.

NewDestruction of Newborn Genetic Test Results Still Has NOT Begun in Minnesota

Destruction of Newborn Genetic Test Results Still Has NOT Begun in Minnesota

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.

New50-State Report Unveiled; States Track Medical Data from Birth to Death Without Consent

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.

NewMN Dept. of Health Registries

MN Dept. of Health Registries

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

New'Biobank' bill threatens genetic privacy

'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

NewTwila Speaking at DNA BioBank Press Conference

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.

Why is Privacy Important to Freedom?

Why is Privacy Important to Freedom?

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.

Human Subjects Research - Major Revision Planned

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.

Baby DNA Lawsuits

Baby DNA Lawsuits

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.

Newborn Genetic Screening - The New Eugenics?

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?"