New Jersey Parents Sue State Over Newborn Blood Retention Policy

Case Overview: A class action lawsuit has been filed against the State of New Jersey, alleging that its practice of retaining newborn blood samples without parental consent violates constitutional rights.

Consumers Affected: Parents and children in New Jersey.

Court: U.S. District Court for the District of New Jersey, Trenton Vicinage

A group of New Jersey parents is suing the state for its practice of keeping newborn blood samples without parental consent. 

Filed on behalf of all New Jersey parents and their children born after 2000, the lawsuit claims the state’s practice violates the Fourth and Fourteenth Amendments. While the parents say they do not dispute the mandatory newborn testing, they argue that the state’s retention and use of the blood samples after testing is unconstitutional.

Why Does New Jersey Collect Newborn Blood Samples?

New Jersey, like all states, requires mandatory newborn screening. Shortly after birth, a baby’s heel is pricked, and blood is collected on a card for testing, the lawsuit explains. This blood is used to screen for 62 different disorders, including cystic fibrosis, hormonal deficiencies, and other congenital conditions.

These screenings, conducted by the New Jersey Department of Health’s Newborn Screening Laboratory, are critical for early detection and treatment of serious diseases. In the lawsuit the parents say they have no objection to this testing itself, which typically provides parents with results within one to two weeks.

The practice has been in place since the 1970s, and participation is mandatory unless a parent objects on religious grounds. However, the parents argue that they are not adequately informed of their right to opt out on these grounds.

What Happens To The Blood Samples After Testing?

Once the state finishes the required tests, it doesn’t discard the remaining blood, known as "residual dried blood spots." Instead, New Jersey has a policy of retaining these samples for 23 years, storing them in a temperature-controlled environment, according to the lawsuit. There is no statute explicitly authorizing or prohibiting this retention, but the plaintiffs argue that parents are never informed about what happens to the blood post-testing.

The lawsuit claims that, on at least five occasions, New Jersey has shared these blood samples with law enforcement without a warrant. Additionally, the parents allege that the state could be sharing or selling these samples to third parties, including researchers or private companies, without informing parents. 

Parents Concerned About State's Use of Their Children's Blood

Hannah Lovaglio, a mother from Cranbury, New Jersey, discovered that the state had retained the blood of her two children, aged five and one and a half, without her consent. Lovaglio, who initially supported the newborn screening tests, said she was appalled to learn that the state had kept her children’s blood for years without asking for permission. She said she is concerned that the state could be misusing her children’s genetic information.

Another couple, Erica and Jeremiah Jedynak of Boonton, New Jersey, described the practice as "creepy" and Erica said she was horrified that the state had kept her son’s blood in what she called a "database."

New Jersey Makes Changes To Newborn Screening Program

In response to the lawsuit, New Jersey’s health officials made some voluntary changes to the newborn screening program, the lawsuit explains. These changes included shortening the retention period and promising to disclose more information to parents about what happens to the blood samples. However, the parents argue that these changes are insufficient because the state still does not ask for parental consent before retaining the blood.

The lawsuit argues that without informed consent, the state continues to violate constitutional rights. The parents provided what they say is a straightforward solution: the state should ask parents for permission to keep the blood samples after testing is complete.

Legal Challenges To Newborn Blood Retention Policies Across the US

New Jersey is not the only state to face legal challenges over its newborn blood retention practices. Michigan recently agreed to destroy more than three million blood samples in response to a similar lawsuit. Texas also settled a lawsuit in 2009 by agreeing to destroy millions of blood spots. 

Other states, such as California, New York, and Minnesota, have been sued for their retention policies, which often involve using the blood samples for research without obtaining explicit parental consent.

The parents in the New Jersey lawsuit are seeking a declaratory judgment, injunctive relief, fees, and costs.

Case Details

• Lawsuit: Lovaglio, et al. v. Kaitlan Baston, Commissioner of the New Jersey Department of Health, et al.
• Case Number: 3:23-cv-21803-GC-RLS 
• Court: U.S. District Court District for the District of New Jersey, Trenton Vicinage

Plaintiffs' Attorneys

• CJ Griffin (Pashman Stein Walder Hayden, P.C.)
• Robert Frommer, Brian A. Morris, and Christen Mason Hebert (Institute For Justice)

Have you experienced a similar situation with your child's newborn blood samples? Do you think parents should be able to choose whether the state keeps their child's blood after testing? Share your thoughts and experiences in the comments below.