Citizens' Council for Health Freedom: Parents Are Being Misled About Research at MN Fair
Twila Brase: Minnesota Department of Health Telling Parents Blood Spots Will Never Be Used for Research Without Their Consent, But Statute Says Otherwise
ST. PAUL, Minn.—As the Minnesota State Fair began last week, Citizens’ Council for Health Freedom (CCHF, http://www.cchfreedom.org) encouraged new and potential parents to visit the booth manned by the Minnesota Department of Health’s Newborn Screening Program and request the official state form that will allow parents to have their newborn’s blood spots and test results destroyed rather than stored by the state and used for research.
Twila Brase, president and co-founder of CCHF, visited the booth at the fair herself and asked for the “Directive to Destroy Newborn Blood Spots and Newborn Screening Test Results” form. It was available, after a staff person searched under a table for it. But more interesting to Brase was a two-page document that was being distributed at the booth—a Q&A of sorts about the Newborn Screening Program.
On the state handout, titled “After newborn screening, what happens to leftover blood spots and results?,” three options for parents are given:
Option A: “The blood spots and results can go into safe storage at the Department of Health. This is what normally happens. You do not have to do anything to choose this option.”
Option B: “The blood spots and results can go into safe storage, and they can also be used for research to help improve the public’s health. To choose this option, you have to give permission by signing a consent form. If you do not give permission, the blood spots and results will never be used for research.”
Option C: “You can ask the Department of Health to destroy the blood spots and results. To choose this option, you have to fill out a destruction request form. If you choose this option, blood spots will no longer be available for testing if you or your doctor needs them.”
Brase said Option B is especially misleading, because Minnesota Statute 144.125 of the Newborn Screening Law, titled “Tests of Infants for Heritable and Congenital Disorders,” states that blood spots used within “newborn screening program operations” include, among other things, “utilization of blood samples and test results for studies related to newborn screening, including studies used to develop new tests.”
“The Department of Health is misleading parents, because newborn screening studies, including the development of new tests, is indeed research,” Brase said. “These studies can happen without parents knowing about it—even if parents do not give permission—unless parents obtain, sign and send in the state’s ‘Directive to Destroy’ form. The document being distributed at the fair this week says that blood spots will never be used for research if parents don’t sign a consent form—and that is simply not true.”
MDH’s Newborn Screening Program booth, also sponsoring a #MadeinMinnesota photo contest, is in the Health Fair 11 Building in the East Crossroads auditorium at the intersection of Dan Patch and Cooper.
CCHF has been instrumental in educating Minnesotans and citizens around the country about the unethical government storage and use of newborn DNA through blood spots and state newborn screening tests, often without the consent of parents.
CCHF is a national organization dedicated to preserving patient-centered health care and protecting patient and privacy rights, and seeks to keep all Americans informed about pressing health care issues and how they will affect their care, their privacy and their wallets.
For more information about CCHF and its activities to protect the genetic privacy of newborn citizens, visit its special web page (www.itsmydna.org), its web site at http://www.cchfreedom.org, its Facebook page at http://www.facebook.com/cchfreedom or its Twitter feed, @CCHFreedom.
Citizens’ Council for Health Freedom, a patient-centered national health freedom organization based in St. Paul, Minn., exists to protect health care choices and patient privacy. CCHF sponsors the daily, 60-second radio feature, Health Freedom Minute, which airs on approximately 350 stations nationwide, including 200 on the American Family Radio Network and 100 on the Bott Radio Network. Listeners can learn more about the agenda behind health care initiatives and steps they can take to protect their health care choices, rights and privacy.
CCHF president and co-founder Twila Brase, R.N., has been called one of the “100 Most Powerful People in Health Care” and one of “Minnesota’s 100 Most Influential Health Care Leaders.” A public health nurse, Brase has been interviewed by CNN, Fox News, Minnesota Public Radio, NBC Nightly News, NBC’s Today Show, NPR, New York Public Radio, the Associated Press, Modern Healthcare, TIME, The Wall Street Journal, The Washington Post and The Washington Times, among others. She is at the forefront of informing the public of crucial health issues, such as intrusive wellness and prevention initiatives in Obamacare, patient privacy, informed consent, the dangers of “evidence-based medicine” and the implications of state and federal health care reform.