NJ Parents File Federal Class Action Lawsuit Challenging State’s Secret Retention of Newborn Blood
Some New Jersey parents have teamed up with the Institute for Justice (IJ) to file a federal lawsuit challenging New Jersey’s practice of keeping collected blood from newborn babies for 23 years without parental knowledge or consent.
In New Jersey, heel prick tests are used to collect the blood of every newborn. Blood samples are sent to NJDOH’s Newborn Screening Laboratory and tested for 61 disorders. While blood screening for newborns is required in all 50 states and the District of Columbia, New Jersey does not obtain parental consent for storage or use of their child’s blood/DNA. Instead, parents are given a handout about the testing process and told that NJ requires a blood draw.
After the newborn screening, NJ keeps the blood from every baby born in the state for 23 years, without the knowledge or consent of parents.
“What makes New Jersey’s program so uniquely disturbing is the complete lack of safeguards for future abuse and the lack of consent, which leave the program ripe for abuse,” said Institute for Justice attorney Christie Hebert. “Parents should not have to worry if the state is going to use the blood it said it was taking from their baby to test for diseases for other, unrelated purposes.”
Plaintiff Parents have legitimate concerns about how their children’s blood may be used. Once the state has these blood samples, they can potentially be sold to third parties or provided to police without a warrant. New Jersey has already given blood to law enforcement without a warrant.
The state Office of the Public Defender is alleging law enforcement in New Jersey obtained blood taken as part of the program and used it to charge the child’s father with a crime, an allegation that has led to cries of alarm from civil liberties advocates.
This issue isn’t new. A 2009 Texas lawsuit revealed that the Texas Department of State Health Services sold newborn blood samples to the Pentagon.
Texas illegally “sold, trade, bartered and distributed” babies’ blood to private companies and the Pentagon without asking or telling their parents, after taking the blood as part of Texas’ “mandatory newborn screening program,” parents claim in a federal class action.
Blood from 8,800 babies was sold or traded for lab equipment from private companies and from the Armed Forces Institute of Pathology – and Texas “knowingly and deceptively withheld this information during settlement negotiations” of a previous lawsuit, the parents say.
Given NJDOH proposals to expand public health exceptions to HIPPA laws, New Jerseyans have cause for concern. Medical privacy is under attack and we’re going to have to work hard to preserve it.
Kudos to parents who are paying attention and taking action!
From 2017: Other developments include the enactment of the Newborn Screening Saves Lives Reauthorization Act of 2014 (Pub. L. 113–240) in December 2014. The law 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.
https://www.federalregister.gov/documents/2017/01/19/2017-01058/federal-policy-for-the-protection-of-human-subjects