Parent consent for storage and use of newborn DNA should be required

The ACMG position paper on residual newborn screening dried blood spots from every American baby erroneously claims newborn blood is a 'national resource' and fails to acknowledge that the DNA-rich blood spots are personal genetic property, not the property of State governments and genetic researchers.

Will the MN House Vote to Repeal Genetic Privacy Rights at Birth?

The Minnesota House is expected to vote on a bill that will limit the ability of parents to protect their child's genetic privacy. The bill exempts newborns from the strong protections of the Minnesota Genetic Privacy Law (M.S. 13.386), and eliminates informed written parent consent rights now in law. Today, by law, government may not collect, store, use, or disseminate the genetic information of citizens without informed written consent. That includes newborn citizens.


To protect every American's right to self-determination, genetic privacy, and DNA property rights, it is time to require informed written parent consent for all facets of the newborn genetic screening program, including storage and use of genetic test results and newborn DNA," said Twila Brase, president of Citizens' Council on Health Care, and author of the report.

MN Senate Committee Says NO to Bill that would Repeal Genetic Privacy Rights

The genetic privacy rights of Minnesota citizens were given a boost yesterday by the Minnesota Senate Judiciary Committee when it refused to hear SF 1478, the Senate bill to repeal genetic privacy rights, says Citizens' Council on Health Care.

House Committee Votes to Exempt Newborn Citizens from Minnesota's Genetic Privacy Law

Citizens' Council on Health Care has denounced last night's House committee vote to undo the State Genetic Privacy Law.

Nine Families Sue State of Minnesota

Citizens' Council of Health Care (CCHC) announced that a lawsuit has been filed today against the Minnesota Department of Health in response to the Department's violation of the 2006 state genetic privacy law by its collection, storage, use and dissemination of newborn blood and baby DNA.

Hold a public hearing!

CCHC releases "Newborn Rights" notification to assist parents of new babies during hospitalization

Scramble, Scribbles, and Obstruction

Stimulus Bill Promises to Ration Medical Treatment and Call it "Effective Care."

Final Economic Stimulus Bill Permits Americans' Personal Health Information to Be Sold for Research and Public Health Purposes WITHOUT Patients' Consent

Stimulus Bill Promises to Ration Medical Treatment and Call it "Effective Care."

CCHC Report on Economic Stimulus & Patient Rights

Stimulus Bill Promises to Ration Medical Treatment and Call it "Effective Care."