TAKE ACTION — Protect Newborn Privacy and Parental Consent

ALERT: A parent-consent battle is taking place in Washington, D.C. Proponents of government newborn (genetic) screening want Congress to pass the Newborn Screening Saves Lives Reauthorization Act (H.R. 482) before the new Congress begins. If passed, this reauthorization would fund the program for five years, limiting the ability of the new, likely Republican-controlled, Congress to change it.

Importantly, proponents want it passed without parental consent requirements for researcher use of newborn DNA, which has been stored by various states without parent consent.

Most babies born in America undergo newborn screening – a heel prick that typically happens at the hospital within the first 48 hours. The blood collected on a card with special filter paper is analyzed by the state’s public laboratory to determine whether the child has any rare, genetic newborn diseases. As CBS news recently stated, newborn screening “is considered such a crucial public health measure that states typically require it.”

MAJOR CONCERNS WITH STATE NEWBORN SCREENING:

First, newborn screening typically happens without parental consent. Although all but three states allow parents to decline the test, Minnesota Department of Health states, “Many parents are unaware that newborn screening happens.” Parents are not fully informed as to what the screening entails – namely, that it allows state government to conduct genetic screening on their child. Additionally, they are often not given enough time to make an informed decision on whether to let the state conduct the test, choose private testing, or forego the test altogether.

Second, state storage and use of newborn DNA for research typically does not require parental consent. Only 14 states allow parents to request that residual dried blood spots (DBS) taken from their child be destroyed after the test is complete. If a state does not allow the DBS to be destroyed (or parents fail to request it due to a lack of understanding), the state stores the blood for varying amounts of time, including decades or indefinitely. Thus, newborn children can become research subjects—and parents have no say in it.

Parents in four states have filed lawsuits against state health departments for violation of parent rights, genetic privacy rights, and more. One mom told CBS, “There should be accountability and transparency on what it's being used for."

WHY ACT NOW?

Congress is likely vote in November and the proposed legislation lacks any protection for newborn genetic privacy or parental consent. Instead, it classifies secondary research using dried blood spots as research on non-human subjects despite it being the child’s DNA, mandates state sharing of data with the CDC.

ACTION REQUEST: Reach out to your Members of Congress and ask them to require parental consent in the bill. CLICK HERE to TAKE ACTION.