Genetic Privacy on Trial: How the State of New Jersey Used Blood-Spots and How this Impacts the Fourth Amendment

Can police departments use blood samples from disease screening programs to solve unsolved crimes? What are the rules surrounding the collection and use of such data, and how are sensitive physical information and privacy protected? These questions have become increasingly relevant as science and technology have continued to ingrain themselves in our daily lives and have continued to pose challenges in the balancing of law enforcement and individual rights. 

The State of New Jersey recently grappled with these complex questions when the Office of the Public Defender and the New Jersey Monitor, a local news source, sued the New Jersey Division of Public Health and Environmental Laboratories for disclosure of records under the New Jersey Open Public Records Act seeking to learn how State agencies use private physical data as an “investigative tool for its prosecutions in order to sidestep the constitutional rights of defendants to be free from warrantless searches and seizures.”  

In newborn screening programs across the country, “blood spots” are collected by medical providers of a newborn between 24 and 48 hours of age, to screen newborns of certain metabolic, genetic, and other disorders. For reasons of public health, states across the country store this sensitive information in databases. Over the years, blood spot screening has grown extensively to be prevalent in natal care in all 50 states, and now routinely requires screening for newborns of at least 30 genetic conditions. 

Blood spot collection and testing is ongoing throughout the country, without the informed consent or knowledge of the parents. This raises a serious privacy concern and should make courts and lawmakers across the country wary of the possibility for abuse.

Like many states across the country, blood spot collection is mandatory in New Jersey, unless there are objections raised by the parents on the basis of religious concerns. In all jurisdictions except Wyoming and the District of Columbia, informed consent of the parents is not needed to obtain blood spot testing. Blood spot collection and testing is ongoing throughout the country, without the informed consent or knowledge of the parents. This raises a serious privacy concern and should make courts and lawmakers across the country wary of the possibility for abuse.

One of the most concerning aspects of this issue is the lack of a standardized process for protecting blood spot information at the federal level. Instead, it is left up to the regulatory framework of different states. Unfortunately, many states, have not even begun to properly address the issue, “[a]ccording to a survey published in 2011, as many as eighteen states simply do not address the retention of newborn screening samples in their state newborn screening laws.” For the states with some regulation, policies vary tremendously across the country, blood spots can be stored by the government for “six months, 20 years, or even indefinitely.” Only very limited states, such as Connecticut, have explicitly limited the use of blood spots as evidence in court, for others, blood-spot data could have chilling effects on our understanding of the Fourth Amendment.  

In the case in question, police subpoenaed a newborn blood spot sample of a child who at the time of suit, was approximately nine years old. The State Police used the blood spot DNA of the child to link the child’s DNA to the suspect of an unsolved sexual assault investigation in 1996. Twenty-five years later, the New Jersey State Police reopened the case and used DNA of the state’s newborn screening lab to find a suspect. This genetic information helped to reveal to police that there was “a close relationship between the baby’s DNA and the DNA taken at the crime scene, indicating that the baby’s father was the person police were seeking.” State Police subsequently used the baby’s DNA to obtain an affidavit of a probable cause, allowing them to buccal swab the defendant, which ultimate resulted in criminal charges. These blood samples were taken “without informed consent” and were designed to be stored by the state of New Jersey for “more than twenty years.” While the primary purpose of blood spot collection is to support public health by detecting and preventing diseases in newborns, the state’s use of this information for criminal prosecution raises significant ethical and legal concerns that must be addressed.  

Ruling on this civil suit, the Hon. Robert Lougy, approved the Plaintiffs’ motion to compel redacted records under the New Jersey Open Public Records Act and the common law right of access to public records. Substantively, the usage of blood-spot information under the Fourth Amendment remains an open question for courts to consider. This case ultimately underscores the need for a comprehensive framework at the state or federal level to balance the vital interests of public health and the protection of individual privacy and informed consent.   

In an era where technology continues to advance, striking the balance between public health and the Fourth Amendment is crucial to continue to safeguard individual liberties. 

 Alberto Bufalino

Alberto Bufalino is a second-year law student at the University of North Carolina School of Law. He is a Chapel Hill-Durham native, who attended Wake Forest University for his undergraduate degree in Politics & International Affairs. Alberto is interested in constitutional law and its intersection with technology and criminal law.