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A group of New York City public school parents and teachers are asking a judge to suspend mandatory coronavirus testing — until the city can guarantee that the tests won’t also be used to collect their DNA in a database.
The eight plaintiffs — including teachers, parents and other staff — claim that the Department of Education has refused to provide them with a contract from company Fulgent Genetics, showing that it won’t place the COVID-19 test “specimens in an active DNA data base,” according to the Manhattan Supreme Court petition from Monday.
The suit claims that, so far, the Department of Education has only sent them “a DOE link assuring parents that all vendors collection tests would destroy samples after ascertaining each test result,” rather than showing a specific contract with Fulgent Genetics.
“DOE has refused to provide petitioners with the contract which would provide this assurance and guarantee,” the court documents allege. “Absent said assurance, petitioners have no way of knowing whether their DNA will be maintained and used against their will by Fulgent Genetics.”
Without this, they claim their constitutional right to privacy could be at risk.
Plaintiff and DOE teacher Michael Kane said he and hundreds of others reached out to Mayor de Blasio, to the DOE Chancellor and to their union president about their concerns, but they were ignored until their lawyer got involved.
“To be completely ignored, what type of good faith is that giving us?” Kane said at a zoom press conference Monday. “What type of trust is that creating when they are asking us to submit ourselves to COVID testing in school and to trust them with taking our specimen and they have provided no response to us?”
The plaintiffs want a judge to block the DOE from doing the tests “until it produces to petitioner’s counsel a contract with those vendors,” and they want the judge to stop the DOE from barring students and teachers who refuse to be tested from coming to school.
Their lawyer, Michael Sussman, says parents and teachers have the right to see a contract explicitly promising them that these COVID test specimens will be destroyed afterwards — especially given that Fulgent Genetics already has its own proprietary DNA database.
Sussman emphasized that his clients aren’t opposed to COVID testing, they are just concerned if the tests are used for other reasons.
“This is not a suit opposing testing the New York City school district. There may be people who oppose testing and they can have their lawsuit litigated in another forum, this is not that case,” Sussman said during a Zoom press conference Monday.
“This is a case that says individuals who subject themselves to testing have a right to know that no company which has a proprietary interest in a DNA database will be benefiting from their specimen.”
NYU Langone professor Dr. Arthur Caplan, who specializes in medical ethics and is not involved in the litigation, called the suit “savvy,” and acknowledged that DNA is present inside the testing samples which could be used for other purposes.
Caplan said a company could theoretically use the data for its own purposes and analysis or sell it to a third party such as a pharmaceutical company.
“It’s not out of the realm of possibility at all and asking for assurances about privacy is well within their rights,” Caplan said. “I’m surprised it would come to a lawsuit.”
Caplan said the lawsuit raises important questions that need to be ironed out in conversations between the DOE, the testing company, teachers and parents regarding how to handle to data.
He said it’s normal that people would be worried that their genetic and health information being shared could lead to difficultly getting health care coverage, life insurance or disability coverage.
Still, Caplan said such data could be used for positive purposes — such as furthering research on COVID-19. And, there are ways to protect people’s privacy by anonymizing the information.
“I hope that out of this battle and legal saber rattling might come a better understanding of what do we really want to do,” Caplan said. “Is all research off the table? Should we always be told what they are going do with our samples?”
“We may want them always destroyed, but perhaps we might want our samples and the DNA used for genetic research that might improve tests or therapies for COVID,” Caplan said. “If we could use it in a study that would give us better drugs maybe we would say ‘great!’”
The DOE, the city Law Department and Fulgent Genetics didn’t immediately return requests for comment.