Twila Brase Testimony on "Repeal Genetic Privacy" Bill

IT'S MY DNA!
Storing and Using Newborn DNA—Without Parent Consent
NEWBORN SCREENING
REFUSAL / OPT-OUT FORMS
NEWBORN SCREENING
California
NEWBORN SCREENING ADDITIONAL INFORMATION LINKS
Private Newborn Screening Options TAKE ACTION - Find Out How Your Baby's DNA is Being Used 50 State CHART - How Long State Government Keeps Your Baby's DNA (2001 to present) 50 States & DC - Newborn Screening Laws CCHF Reports on Newborn Screening Nationwide Protect Your Baby at the Hospital - MN "Newborn Rights" Sign to Post After Birth "[M]ost parents are completely stunned when they find out that their child's blood is being held by the State. They have no recollection and they think it's unlawful." Dr. Sharon Kardia, University of Michigan, September 23, 2009.
Photo from 2005 MN Department of health provider manual
Newborn screening is the most widely performed type of genetic testing in the United States today. . . . Most states, including New York, do not require parental consent. . . .Most newborn screening programs, including New York's program, store residual newborn blood samples (bloodspots) and use them for research. "Genetic Testing and Screening in the Age of Genomic Medicine (Exec. Summary), NY Dept. of Health.
Whether you like it or not, a complete [genomic] sequencing of newborns is not far away. Francis Collins, Director, National Institutes of Health, October 26, 2009
10 PART OVERVIEW - Newborn Genetic Screening, Baby DNA Warehousing Government Research & No Parent Consent
Twila Brase Testimony on "Repeal Genetic Privacy" Bill![]()
Newborn screening is the “largest single application of genetic testing in medicine,” as stated by Dr. Jeffrey Botkin, MD, MPH, at the University of Utah’s Department of Pediatrics and Medical Ethics. Also, I’d like to draw to your attention the written testimony submitted by the Council for Responsible Genetics, which opposes this bill saying it’s in opposition to recommendations by national committees and research studies.
Legislation Will Strip Minnesota Parents of Consent for Storage and Use of Baby DNA![]()
ST. PAUL, Minn.—There’s something expectant parents should know about the impending birth of their little ones this year. Their baby’s most precious gift—their genetic blueprint—is at risk of being used and stored forever by the Minnesota Health Department—without consent.
Protect Privacy or Accept Government Control![]() He who holds the data makes the rules. If you haven’t figured this out, it’s almost too late. Obama knows it. In 2009, his team mandated electronic medical records and $27 billion to make it happen as a “foundation” for health care reform. CCHF to Testify at Baby DNA Meeting![]()
ST. PAUL, Minn.—Twila Brase, patient advocate and co-founder of Citizens’ Council for Health Freedom, a Minnesota-based national organization with a goal to preserve patient-centered health care and protect patients’ rights, will testify before the Minnesota State House of Representatives Health and Human Services Committee tomorrow regarding parental consent and the storage and use of baby DNA. Citizens’ Council for Health Freedom Celebrates 20 Years of Progress![]() ST. PAUL, Minn.—Over the past two decades, there has been a tireless force in the crusade to preserve patient-centered health care and protect patients’ rights. The organization is the Minnesota-based Citizens’ Council for Health Freedom, co-founded in 1994 by Twila Brase. Don't Trust Government on Baby DNA![]() Government keeps the DNA of newborns -- without parent consent. All across the country, state health departments are taking newborn DNA within 48 hours of birth, and many are storing it for genetic and other research. Some indefinitely. Consent is usually not required. Hospitals prick the baby’s heel, drip the baby’s blood (DNA) onto a card with filter paper, and send it to the government. MDH Statements About Destroying Baby DNAVarious lawsuit documents in which the Minnesota Department of Health (MDH) said they would destroy all or part of the Baby DNA bloodspot cards (specimens) and genetic test results. The MDH press release appears to say that they will destroy all data and DNA they collected before the Supreme Court decision. 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. 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. Obama’s Phony October 1 “Deadline”![]() October 1 is a phony deadline. Ignore it. Nobody has to sign up for Obamacare. Absolutely nothing has to happen on October 1. Instead, October 1 is the first day to refuse to enroll in Obama's exchanges (refuse2enroll.org). In six days, you can begin your own personal Obamacare resistance campaign. Our motto: Resist. Repeal. Reclaim. |