By Roy Freiman, Andrew Zwicker & Annette Quijano
We would never expect a bank to release our financial information any more than we would want the government to distribute our social security number, or a doctor to share our medical records. So why are we so compromising when it comes to the privacy of our most sensitive personal information: our genetic data.
Containing information as basic as your ethnicity to information comparably as intimate and unique as your fingerprint, genetic data can reveal a lot about who you are both on the surface and beneath it.
With the rise of direct-to-consumer genetic testing, millions of Americans began opting-in to services offered by private companies like 23andMe and Ancestry.com with hopes of discovering more about their heritage, connecting with lost relatives or identifying increased risk for disease like Alzheimer’s and breast cancer. However, as they swabbed their mouth or spit in a tube and mailed in their DNA for analysis, few paused to consider the implications for their data privacy.
As details of how your data could be used and where it could end up remained deep in the fine print of company policies, many remained unaware of what and how much they had consented to give away. A Deloitte survey from 2017 puts the number of Americans willing to consent to legal terms and service agreements without reading them at 91%. That fact, paired with limited industry transparency, has put a huge burden on consumers and made informed consent relatively elusive.
Today, it is quite likely if you submitted your DNA sample for testing, your genetic data sit anonymized in a database owned by a pharmaceutical company, academic research group or some other third-party entity. In 2018, 23andMe struck a $300 million deal to share its genetic database with pharmaceutical giant GlaxoSmithKline, and the company maintains partnerships with Procter & Gamble Beauty, Pfizer and others. Ancestry.com similarly shared data, collaborating with Google’s Calico to study aging.
And, while in the aggregate this data presents enormous opportunity for new drug development and biomedical advancement you can never really be sure that your data won’t be leveraged by bad actors for all the wrong reasons.
As a number of studies have pointed out, anonymized data are not fool proof. With enough effort, a significantly large chunk of data can be traced to the originating individual and their relatives. Running crime scene evidence against DNA profiles publicly uploaded to GEDmatch, police solved the four decades old Golden State Killer cold case. Therefore demonstrating that, despite efforts by companies to detach identifying information, the promise of anonymity and privacy is difficult to guarantee.
We are lacking a regulatory framework to address the privacy of genetic information. As strong federal policy in this specific area has yet to emerge, what has resulted is an industry that remains largely under-regulated and a public that is alarmingly uninformed.
New Jersey can’t wait. We need better safeguards for genetic privacy now. That’s why we’ve charted our own course, sponsoring legislation (A-1170) that not only requires consent to use DNA samples and any resulting genetic information, but also makes DNA samples the exclusive property of the individual.
Stipulating ownership of genetic data is about securing New Jersey consumers’ right to choose. Empowered and informed decision-making can only arise when we are the ones in control of who can and cannot access or use our data. Under the measure, we assure the power always remains in the hands of the consumer.
With this legislation, New Jersey would join 24 other states that require informed consent to disclose genetic information. The state also would become sixth after Alaska, Colorado, Florida, Georgia, and Louisiana in explicitly defining genetic information as personal property, and second only to Alaska in extending personal property rights to DNA samples.
Protecting people and ensuring all industry competitors play by the same rules are fundamental strategies to securing greater genetic privacy for New Jersey residents. Laws requiring fair and responsible industry behavior are how we keep genetic data in the right hands – the individual to whom it belongs.
ZWICKER & CONAWAY INTRODUCE BILL TO REGULATE NJ LAW ENFORCEMENT’S USE OF FACIAL RECOGNITION TECHNOLOGY
Just recently, the New Jersey Attorney General prohibited law enforcement in all 21 counties from using Clearview AI’s facial recognition software after a New York Times article revealed the start-up had built its database by scrubbing billions of photos from online social media platforms.
In light of many concerns regarding the implications of this new technology, Assembly Democrats Andrew Zwicker and Herb Conaway introduced a measure (A-1210) to require the Attorney General or governing body of a county or municipality, as appropriate, to host a public hearing prior to the implementation of any facial recognition technology by a State or local law enforcement agency.
“The use of facial recognition technology raises serious data privacy concerns, so we need to be thoughtful in our consideration of policy around this issue,” said Assemblyman Andrew Zwicker, chair of the committee. “In creating a public forum for discussion, we can involve local New Jersey residents in the dialogue about facial recognition and its use in police work. While the benefits of facial recognition technology are real, the inherent risks to privacy, civil liberties, and civil rights are severely consequential and must be weighed equally.”
The Assembly Science, Innovation and Technology Committee during the Monday meeting received testimony from academic, policy and industry experts concerning the use, prevalence and risks of facial recognition technology.
“The fact is facial recognition technology is out there and law enforcement is using it,” said Conaway (D-Burling). “But without a better sense of how exactly they are using it, or an understanding of how effective it is in helping apprehend criminals and solve crimes, we can’t make any definitive assessments about whether applications of this technology are necessary, appropriate and ethical.”
‘Facial recognition technology,’ as defined within the bill, is a computer application that uses facial recognition algorithms to identify or verify a person from a digital image or video frame from a video source.
Further provisions of the legislation would require the initial public hearing to identify clear objectives and goals for agencies regarding use of the technology, and that the program’s efficacy be evaluated after five years.
A test run by the ACLU of Northern California further revealed facial recognition misidentified 26 members of California’s State Legislature as individuals from an arrest photo database. Over half of the legislators misidentified were lawmakers of color, indicating a worrisome racial disparity in software’s algorithmic accuracy.
ZWICKER & SINGLETON: WHO’S GIVING N.J. CANDIDATES $100M TO WIN OUR VOTE? NOT KNOWING HURTS DEMOCRACY
By Assemblyman Andrew Zwicker & Senator Troy Singleton
As we mark the 10-year anniversary of the monumental Supreme Court ruling in Citizens United v. Federal Election Commission, which has brought with it an unprecedented explosion in political spending by independent special interest groups, we jointly renew the call for transparency.
Entering 2020, we look back on a decade of court decisions that together have empowered special interests to wield unlimited, undisclosed sums of money funneled in by wealthy donors and organizations to distort our elections and threaten the foundation of our democracy.
The compound of this has been groups who do not disclose their donors flooding federal elections with $963 million in outside spending, according to data from Open Secrets. Shockingly, that number had been only a mere $129 million in the previous decade. In New Jersey alone, according to data from the New Jersey Election Law Enforcement Commission, “dark money” spending by independent groups ballooned to nearly $100 million in just the 2017 and 2018 election cycles.
This puts spending by these groups at the gubernatorial, legislative and congressional levels together at more than twice the combined spending by county and state political committees – who under law are bound to disclose large donors. By virtue, that puts our ability to identify sources of campaign funding to less than half the total amount of contributions streaming into New Jersey elections.
The relentless increase of dark money spending has steadily eroded our ability to know who is attempting to influence our elections as groups are able to keep their sources of funding a secret, opaque to the public. Their influence is profound and has impacted elections at all levels of government.
But this issue goes beyond electioneering. The interests backed by dark money have become infused into every part of political life, and now also tremendously impact the outcomes of public policy. Without clearer regulation and reforms, this threatens the general interest of the people of New Jersey. That’s why the Garden State needs to take a stand and shine a light on dark money.
This issue is about people and the protection of equitable democracy where the interests of a few aren’t being disproportionately prioritized over the interests of the many. Voters have a right to know where the money is coming from in order to make empowered, informed decisions about the people they want representing them.
We cannot afford for progress on dark money reform to be stunted by groups across the political spectrum who benefit from or advocate for nondisclosure. They know who they are. Our law (S-150), currently on hold since October 2019 due to a court-issued injunction, is timely. As written and enacted, it will require dark money groups to report large sums of contributions when operating in New Jersey.
And despite pending litigation allowing dark money to stay dark, we are committed to continuing the fight because shining a light is the single most important step we can take toward good government.
At present without reform, New Jersey is falling short of its commitments under this law to set a precedent for accountability, transparency and fairness when it comes to money driving politics.
The simple fact is this: Everybody is in favor of disclosure until they have to disclose. The people of New Jersey deserve better and so does our democracy.
Senator Troy Singleton represents the 7th Legislative District. Assemblyman Andrew Zwicker represents the 16th Legislative District. Both are sponsors of dark money legislation (S-150) signed into law by the governor in June 2019.
With loneliness affecting three out of four Americans, a bill sponsored by Assembly Democrats Andrew Zwicker, Matthew Milam and Vincent Mazzeo requiring the Commissioner of Human Services to study how social isolation and loneliness impact certain populations was signed into law Tuesday.
The law (formerly bill A-5314) requires the Commissioner to assess and report on the nature and frequency of social isolation in New Jersey, specifically among people aged 65 and older, individuals with disabilities, and individuals with mental illness. Other vulnerable populations, including military service members, would be included in the study as deemed appropriate.
“Social isolation is not just a social issue, but a public health concern,” said Zwicker (D-Hunterdon, Mercer, Middlesex and Somerset). “For elderly and other vulnerable and special populations, isolation can negatively impact health outcomes and lead to premature death. The Commissioner will have the critically important work of studying this issue and how it impacts certain populations. With the research and evidence discovered as a result, we can begin to effectively address social isolation.”
“The Commissioner’s analysis will uncover how often the people in these groups feel isolated, the number and percentage of people in the groups who feel isolated, and the number of people in the group who are more prone to feeling isolated,” said Milam (D-Atlantic, Cape May and Cumberland). “We also need to understand the triggers that contribute to such isolation.”
The report prepared by the Commissioner will identify demographic and other characteristics held in common by members of these groups. It must also include a wide array of information, including symptoms and indicators of social isolation, circumstances and situations that contribute to isolation and trends among the socially isolated.
“Many people don’t realize that loneliness really does impact health and wellness,” said Mazzeo (D-Atlantic). “It’s actually a public health issue that is linked to smoking, obesity and the risk of death in older adults.”
The Commissioner’s report will also indicate ways in which other states have addressed issues of social isolation and which resources within our own state are available or could be improved.
The final report will be submitted to the Governor and Legislature, and its findings and recommendations will be published on the Department of Human Services’ website.
NOW LAW: ZWICKER & BENSON “BOT” MEASURE TO PROHIBIT MISLEADING COMMUNICATION INVOLVING PURCHASES, ELECTIONS
Looking to strike a balance between innovation, transparency and consumer protection, a bill prohibiting the use of an online “bot” to communicate or interact for the purpose of misleading a person during a purchase, or to influence the outcome of an election, was signed into law by the Governor on Tuesday.
Now law, the legislation (A-4563) sponsored by Assembly members Andrew Zwicker and Daniel Benson protects the public from bad actors who would utilize bots to spread misinformation, a problem not limited to the state of New Jersey.
“The spreading of misinformation used to influence elections or otherwise mislead consumers is a real and credible threat to our democracy and way of life,” said Assemblyman Zwicker (D-Somerset, Mercer, Middlesex, Hunterdon). “Making sure that New Jerseyans know whether they are interacting with an actual person or a computer helps keep people informed and gives them one more layer of protection against people or entities who may have malicious intent.”
As defined under this new law, a ‘bot’ is an automated online account where most of its posts are not operated by a person.
“Living in an era of rapid online social technological change has made it increasingly more difficult to discern false information from true information,” said Assemblyman Benson (D-Mercer, Middlesex). “Enacting this legislation helps us better protect people who might otherwise be unsuspecting of the threats posed by bots.”
A person who violates the provisions of this law will be liable for a civil penalty of $2,500 for the first offense, $5,000 for the second offense, and $10,000 for each subsequent offense. If the individual discloses that it is, or is using, a bot, liabilities would not be applicable. The disclosure would need to be clear, conspicuous and reasonably designed.
According to a recent Pew Research Center poll, of the 66 percent of Americans who report familiarity with social media bots, 80 percent think they are used for mischievous activities. Another 66 percent view social media bots as negatively affecting Americans’ thoughts about current affairs.
The law takes effect 180 days after the date of enactment.
In an effort to maintain a fair election process in New Jersey, legislation promoting voting transparency sponsored by Assemblyman Andrew Zwicker and Assemblyman Roy Freiman was signed into law by the Governor on Tuesday.
The “Voting Precinct Transparency Act,” (A-4564) – now law – requires the filing of election district, county district and municipal ward boundary data with the Secretary of State for posting and downloading online.
It further requires the Secretary to post a table or database containing the election results per election district in a format that matches the election districts boundary data.
“Some states do a great job of providing precinct-level election results, others do a great job of providing precinct geographies,” said Assembly Andrew Zwicker (D-Somerset, Mercer, Middlesex, Hunterdon). “However, most states don’t compile either, and the few that do, don’t do so in a way that is standardized. Currently, New Jersey is one of the states that doesn’t compile and release them all. This new law would change that and indeed, would make New Jersey a leader in transparency about election data.”
Currently, all municipalities in New Jersey are divided into election districts for the purposes of election administration and voting. Essex, Atlantic and Hudson counties are divided into county districts from which voters elect some or all of the members of the county governing body. Sixty-four municipalities in New Jersey have established municipal wards from which voters elect some or all of the members of their respective municipal governing bodies.
“Election data should be accessible to all in a format that is clear and understandable,” said Assemblyman Roy Freiman (D-Somerset, Mercer, Middlesex, Hunterdon). “Our goal has always been to protect the rights of voters and ensure that all elections are fair and in compliance with federal mandates. This law is an added layer of security in order to do just that.”
Under the law, the Secretary of State must make this data available on the official website of the Division of Elections for the public to download free of charge.
It is important to have high-quality data indicating the boundaries of precincts. According to the sponsors, other benefits would include:
• establishing a precedent of releasing high quality, usable data for use by all New Jerseyans;
• possibly making election administration and ballot assignment easier; and
• making it easier for municipalities and counties to comply with federal mandates such as the Voting Rights Act.
The act goes into effect immediately.
ZWICKER, MURPHY & SUMTER BILL PROTECTING WOMEN’S RIGHTS TO HEALTHCARE COVERAGE OF CONTRACEPTIVES UNDER STATE-BASED HEALTH EXCHANGE NOW LAW
Legislation revising state law to require healthcare coverage of contraceptives sponsored by Assemblyman Andrew Zwicker (D-Somerset, Mercer, Middlesex, Hunterdon), Carol Murphy (D-Burlington) and Shavonda Sumter (D-Bergen, Passaic) was signed into law Thursday.
The law (formerly bill A-5508) provides that health insurance carriers and the State Health Benefits Program subject to the law will be required to provide coverage for certain services, drugs, devices, products and procedures, including contraceptive drugs, devices and products approved by the United States Food and Drug Administration, subject to certain conditions.
The Assembly sponsors issued the following joint statement upon the bill becoming law:
“Federal changes to the Affordable Care Act aimed to jeopardize women’s access to safe, preventive care. This law will remove those obstacles in New Jersey and preserve the benefits afforded to residents’ under the ACA. With this law, women will continue to have insurance that covers contraception without having to pay out of pocket.”
With an increasing demand for behavior analysts throughout the country – especially in New Jersey – Assembly Democrats have sponsored legislation to make licensure available and mandatory for these professionals. Upon the bill (A-4608) being signed into law Monday, Assembly sponsors Andrew Zwicker (D-Somerset, Mercer, Middlesex, Hunterdon) and Joann Downey (D-Monmouth) released the following joint statement:
“Applied behavior analysts (ABAs) offer a valuable service to their patients by scientifically determining what modifications could be made to improve behavioral outcomes. An ABA’s recommendations and interventions can help both children and adults who have been diagnosed with autism or other mental health disorders, in areas such as social skills and communication, and address other behavioral concerns.
“New Jersey has a responsibility to ensure that any healthcare professionals operating within our state are both competent and qualified. By creating a State Board of Behavior Analyst Examiners to license certified ABAs, we will be doing just that.
“This law will help families feel more secure in knowing the services their loved ones receive from an ABA are backed by both experience and licensure requirements. It will also help ABAs indicate the legitimacy of their services to the many individuals who can benefit from them.”
ZWICKER, MUKHERJI & SWAIN BILL CALLING FOR MEASURE OF GLOBAL WARMING OVER 20-YEAR TIME HORIZON NOW LAW
Seeking to better understand and reverse the effects of climate change, legislation (A-4606) requiring New Jersey’s state agencies to use a 20-year time horizon, versus the 100-year time horizon, to calculate the ‘global warming potential’ and environmental impact of greenhouse gases was signed into law by the Governor on Monday.
Sponsors issued the following statements:
Assemblyman Andrew Zwicker (D-Somerset, Mercer, Middlesex, Hunterdon): “The threat of global warming increases every day while the President has given up our leadership position in curbing greenhouse gases on the world’s stage. Through this law, New Jersey will take firm and calculated steps on how we regulate our emissions. Understanding that not all pollutants have the same impact on the Earth’s warming, measuring the global warming potential of gases over a 20-year time span will allow us to craft public policies that enable the State to better address how we’ll combat global warming.”
Assemblyman Raj Mukherji (D-Hudson): “The science is clear: climate change is real, serious and can potentially do irreversible damage to the planet and its inhabitants, including us. With this fact established, we must take every step necessary to protect the wellbeing of the only planet we call home. By switching from a 100-year time horizon to a 20-year time horizon, we will be able to more accurately represent the short-term effects of greenhouse gases on the environment, and prevent these short-term effects from becoming long-term.”
Assemblywoman Lisa Swain (D-Bergen, Passaic): “Time is running out for us to save our planet from the destruction of climate change. We don’t have 100-year periods to study the impact of greenhouse gases anymore; the time for that has passed. If we are to tackle this difficult issue, we must act swiftly and definitively. By utilizing a 20-year time horizon to study greenhouse gases, we will better be able to develop policies which work in the best short-and-long-term interest for our environment and our residents.”
The law takes effect immediately.
Zwicker & Downey Legislation Creating Licensure Board for Applied Behavior Analysts Heads to Governor
(TRENTON) – With an increasing demand for behavior analysts throughout the country – especially in New Jersey – Assembly Democrats have sponsored legislation to make licensure available and mandatory for these professionals. Upon passage of the bill (A-4608) in both the Assembly and Senate Monday, with a vote of 71-1-0 and 35-2 respectively, Assembly sponsors Andrew Zwicker (D-Somerset, Mercer, Middlesex, Hunterdon) and Joann Downey (D-Monmouth) released the following joint statement:
“Applied behavior analysts (ABAs) offer a valuable service to their patients by scientifically determining what modifications could be made to improve behavioral outcomes. An ABA's recommendations and interventions can help both children and adults who have been diagnosed with autism or other mental health disorders, in areas such as social skills and communication, and address other behavioral concerns.
New Jersey has a responsibility to ensure that any healthcare professionals operating within our state are both competent and qualified. By creating a State Board of Behavior Analyst Examiners to license certified ABAs, we would be doing just that.
This legislation will help families feel more secure in knowing the services their loved ones receive from an ABA are backed by both experience and licensure requirements. It will also help ABAs indicate the legitimacy of their services to the many individuals who can benefit from them.”