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Michigan Baby Blood Ruling, New Jersey Lawsuit Raise Grave Questions About Use of Government Databases As State Legislators Push More Changes to Law

A recent New Jersey lawsuit and a Michigan ruling regarding newborn blood samples shine a spotlight on what government is authorized to do with the information it collects, the disclosure of these uses to the public, and how states handle informed consent. While the information age zeitgeist has normalized the habit of voluntarily sharing details about nearly all aspects of a social media user’s life, participation in digital retail rewards programs or subscriptions track spending patterns and preferences, and smart phone apps mine devices for information about both users and the ambient environment including location data, not enough voices are talking about the way all of this data is used and combined with other records.

Background:

In 1977, the State of New Jersey passed a law requiring the implementation of a statewide program to screen newborns for a specific list of conditions with the general understanding that, when detected shortly after birth, children suffering from them could be treated with early medical intervention to avoid disability. Over the years, presumably based on scientific discoveries, more conditions were added to the original list by state lawmakers. Most recently, citing more sophisticated genetic testing and data analysis available through research, development and changes in technology, a 2019 bill extensively amended the NJ Health and Vital Statistics Law concerning the newborn screening program. Those changes were signed into law by Governor Phil Murphy on January 13, 2020.

Meanwhile, a 2018 case alleging misuse of newborn screening data quietly made its way through the Michigan court system as the U.S., along with the rest of the world, navigated the uncertainty, unrest and disillusion caused by the coronavirus pandemic. At some point, the New Jersey Monitor and the State of New Jersey’s Office of the Public Defender learned about law enforcement access to and use of DNA obtained through the State’s newborn screening program.

"In New Jersey, which retains blood spots for 23 years, the Office of the Public Defender earlier this year discovered that law enforcement officers have used them without parental permission in crime investigations, including to identify a suspect in a rape case. That office, along with the New Jersey Monitor, sued the state in July after officials declined to divulge how New Jersey uses blood spots."

"In New Jersey, a handout given to new parents tells them the blood screening is required by law, with no information for opting out either from the blood testing itself or the spots’ storage afterward. The sheet also does not inform parents that New Jersey retains samples for 23 years, nor what they might be used for during that time."

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Developments:

On September 22, 2022 Asw. Mila Jasey and Asm. Raj Mukherji introduced a bill which, if passed, would restrict genetic testing of DNA collected from newborns and crime victims in New Jersey. A4642 was rapidly referred to the Assembly Judiciary Committee and posted for consideration by the Chair (Mukherji) on the September 29, 2022 agenda alongside bills about county tax administration, planning for mass casualties and active shooters at public venues and houses of worship, pro bono legal representation for military members, potential garnishment or forfeit of state pensions, pilot programs for mental health and gambling addiction seemingly modeled after the substance abuse diversion program commonly known as ‘recovery court,’ recommendations from the Comptroller about municipal benefits, and a bill restricting employee non-disclosure and non-disparagement clauses in contracts.

While it’s unlikely that many disagree with the intention behind A4642, it (notably) seems to address a problem which never should have occurred. Also, after the rush to introduce and get a legislative committee hearing for the bill which spanned only seven days, it was amended and voted on at the meeting without those changes being available to the public. A4642 is far from being signed into law, but WANJ would be remiss to not point out that play: deployment of a standard ‘Trenton tactic’ (making last-minute legislative changes) which functions to reduce and disaffect any meaningful public input on potential laws during the lawmaking process.

Timely passage and enactment of the legislation could presumably result in dismissal of the lawsuit filed by the Office of the Public Defender and the New Jersey Monitor… and a lost opportunity to learn how the State of New Jersey has been using the public’s genetic material for over 4 decades. Furthermore, as introduced, the bill would only impact a narrow set of circumstances during which DNA is collected. Closing this ‘loophole’ still leaves a lot of questions in our minds about how other material containing genetic information (obtained by, on behalf of, or otherwise owned by the State of New Jersey) may be handled, studied, or potentially used as a ways and means to advance public policy and commercial activity.

Why it matters:

Regrettably, transparency (especially the perceived or actual lack of it,) is at the heart of this and many of today's most pressing issues. There’s nothing new under the sun; the capacity for and practical misuse and weaponization of information against human targets has been on display for some time. However, as Americans become increasingly aware of the myriad ways that data collection and information sharing has led to the subjugation of their personal privacy and/or the diminishment of their civil rights for the purported common good, questions about how and why governments gather and use what it collects from citizens are not only warranted, they’re imperative.

We predict that New Jerseyans (and Americans at large) will learn a great deal, one way or another, regarding how long, under what circumstances, and for what purposes public officials have seen fit to mine state-owned databases and correlate that data with information collected by private sector players through public private partnerships. Maybe you’ve heard about the Chinese Communist Party’s social credit score program. Take a look around…it’s plausible to foresee enterprising applications parlaying the sum of our data into a gamified grid for social engineering purposes - including as a primary means to suppress dissenting or minority points of view or “undesirable” traits - on the horizon, if not already in operation amid U.S. society.

Bottom line:

The use, abuse and (mis)handling of personal information and government records data is something that all Americans, regardless of political persuasion, should care about because it represents an entry point for a very real threat to our way of life by not only undermining our Bill of Rights, but also our diversity. Although many elected officials and public figures champion policies which purport to further the causes of diversity, equity and inclusion, data collection coupled with the application of algorithms and other forms of artificial intelligence to carry out tasks in the delivery of government services has the potential to seriously compromise our cherished American ideals of life, liberty, and the pursuit of happiness. This can happen when people are reduced to numbers, individual distinctions are analyzed or aggregated in ways that permit weaponization or politicization, and the system gets gamed for power retention and profit optimizations benefitting the few via public private partnerships targeting the many.