Human Subjects Research

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!

Senate Passes Amendment Protecting Privacy— Measure Heads to House Today

Senate Passes Amendment Protecting Privacy— Measure Heads to House Today

ST. PAUL, Minn.—The U.S. Senate last night passed an Amendment to the “Newborn Screening Saves Lives Reauthorization Act of 2014” (H.R. 1281) that will take a necessary step to protect babies’ private genetic data and ensure that parents are informed about their newborn’s screening blood spots and how they will be used.

Babies Die from Federal Medical Experiments

Babies Die from Federal Medical Experiments

Federal officials are defending an unconscionable act. Between 2005 and 2009, the National Institutes of Health (NIH) supported research on 1,316 premature newborns without requiring parents to be told their baby could die and the baby’s oxygen monitor would not show their child’s true oxygen level. 

Florida Becomes First State to Ban Scanning Kids for Biometric Data

Florida Becomes First State to Ban Scanning Kids for Biometric Data

ST. PAUL, Minn.—As schoolchildren in Florida prepare for the exciting end of the year, their parents can celebrate a victory and breathe a sigh of relief, too.