Congress Has Two Weeks to Protect Newborn Privacy Rights and Restore Parental Consent

***NEWS RELEASE***

For Immediate Release
March 6, 2017

MEDIA CONTACT:
Hamilton Strategies, 610.584.1096, ext. 104, or Media@HamiltonStrategies.com 

 

Congress Has Two Weeks to Protect Newborn

Privacy Rights and Restore Parental Consent

Citizens’ Council for Health Freedom:

Parents Losing the Power to Keep Their Baby’s DNA Private

ST. PAUL, Minn.—For years, one of the central issues for Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), a national health freedom and patient advocacy organization, has been the protection of Baby DNA.

Newborn screening is the most widely performed type of genetic testing in the U.S., and many states do not require parental consent to store newborn bloodspots and use them for research. These bloodspots carry a baby’s genetic blueprint and should not be stored or researched by the government, CCHF maintains.

Now, a new issue threatens this privacy that babies—and their parents—deserve.

On Jan. 19, the U.S. Department of Health and Human Services and 15 other federal agencies issued the final rule on “Federal Policy for the Protection of Human Subjects,” typically called “The Common Rule.” The rule updates “regulations that safeguard individuals who participate in research,” and CCHF says it leaves the country’s youngest citizens out in the cold when it comes to patient privacy.

“Special protections for the genetic privacy of children and newborn citizens were originally set forth in the Newborn Screening Saves Lives Reauthorization Act of 2014, but it appears those protections have been lost,” Brase said. “Now, we will urge Congress to use the Congressional Review Act to reconsider this rule due to the absence of those 2014 protections in the final Common Rule.”

Congress has 60 session days after the rule was finalized—about two weeks from now—to reconsider the language and return privacy rights to parents and their newborns.

Brase added that the new Common Rule states that the Newborn Screening Saves Lives Reauthorization Act of 2014 “made a number of changes relevant to the HHS regulations for protecting research subjects, including asserting that research with newborn dried blood spots (DBS) that is federally funded pursuant to the Public Health Service Act is to be considered research with human subjects, and that the provisions allowing IRBs to waive consent would not apply. By statute, the changes made by this law applied only until changes to the Common Rule are promulgated. Thus, the changes made by this statute will no longer apply after the effective date of this rule, January 19, 2018.” [emphasis added]

“Some states keep newborn blood specimens indefinitely, and some keep them for several years,” Brase said. “The updated version of the Common Rule essentially guts the consent requirements we legally secured in 2014 and makes baby DNA accessible to the government and others for research purposes again—without parental consent. Thus, the newborn who’s been tested through newborn screening could become a subject of state research for test development purposes—with no knowledge on the part of the parents.”

Read CCHF’s statement on this issue, and visit CCHF’s webpage dedicated to protecting Baby DNA.

CCHF has launched The Wedge of Health Freedom (www.JointheWedge.com) to transform the entire health care system back to freedom and restore simplicity, affordability and confidentiality. Nearly 200 Wedge practices, where patients can find affordable, patient-centered care, are located in 44 states and listed online.

CCHF is a national patient-centered health freedom organization existing to protect health care choices, individualized patient care, and medical and genetic privacy rights. For more information about CCHF, visit www.cchfreedom.org, its Facebook page or its Twitter feed @CCHFreedom. Also view the media page for CCHF here. For more about The Wedge of Health Freedom,
visit www.JointheWedge.com, The Wedge Facebook page or follow The Wedge on Twitter @wedgeoffreedom.

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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

For more information or to interview Twila Brase, president and co-founder of Citizens’ Council for Health Freedom, contact Deborah Hamilton at 215-815-7716 or 610-584-1096, or Beth Harrison at 610-584-1096, Media@HamiltonStrategies.com.