Human Subjects Research

Revised Common Rule Strips Parents of Consent Rights Re: Baby DNA Used for Research

Revised Common Rule Strips Parents of Consent Rights Re: Baby DNA Used for Research

ST. PAUL, Minn.—As things stand, in just over two months parents will lose their consent rights for the use of their newborn baby’s DNA for federally funded research, once the revised Common Rule goes into effect on July 19, 2018.

 

New Parent Lawsuit Exposes Stolen ‘Baby DNA,’ Says Citizens’ Council for Health Freedom

New Parent Lawsuit Exposes Stolen  ‘Baby DNA,’ Says Citizens’ Council  for Health Freedom

ST. PAUL, Minn.Citizens’ Council for Health Freedom (CCHF) is applauding a new lawsuit where a group of parents are suing the state of Michigan for “stolen blood” because the Michigan BioTrust for Health stores Baby DNA for research—without parental consent.

Parents Sue Michigan for Stolen Blood (“Baby DNA”)

Parents Sue Michigan for Stolen Blood (“Baby DNA”)

The Michigan BioTrust for Health is storing newborn DNA for 100 years. Philip Ellison, the father of a newborn, is an attorney whose job is to sue the government. He got nine other families together in a federal lawsuit. And he sued the state health department and the biobank. His special web page: stolenblood.comFor more on issue: itsmydna.org

Hits and Misses for Health Freedom in 2017’s Top Headlines

Hits and Misses for Health Freedom  in 2017’s Top Headlines
ST. PAUL, Minn.—This past year was certainly eventful when it came to headlines that shaped the health care landscape. In fulfilling its mission to educate and engage Americans about health care policies that affect them personally, Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.orghas been a voice of support or opposition, depending on the proposed statutory and regulatory revisions.
 

CCHF Letter to Pres. Trump & Sec. Price regarding the Newborn Screening Common Rule

In December 2014, President Obama signed the Newborn Screening Saves Lives Reauthorization Act in December 2014. It included the language we worked on with Senator Rand Paul and the Senate Steering Committee. It required parent consent for the use of newborn DNA (collected for newborn screening and stored without consent by many states) for federally-funded research.

A Win for Patient Privacy

A Win for Patient Privacy

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.”

Addendum to CCHF's Public Comments - "Human Subject" Designation

Addendum to CCHF's Public Comments - 'Human Subject' Designation

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.

Huge Privacy Concerns with New Electronic Health Records’ Alzheimer’s Test

Huge Privacy Concerns with New Electronic Health Records’ Alzheimer’s Test

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.

Health Care Spending to Climb Through 2024;

Health Care Spending to Climb Through 2024;

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.

ACT NOW - Stop Congress From Ending Medical Privacy!

ACT NOW - Stop Congress From Ending Medical Privacy!

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!