BOE concerned about ethics of genetic-based reading intervention program

NEW HAVEN — Members of the Board of Education expressed discomfort about continuing a reading intervention research program that has operated in the district for nearly a decade, after board President Darnell Goldson mentioned Monday that researchers from Yale were collecting DNA samples from children.

The Lexinome Project has operated in the district since 2015 as part of a reading intervention study run by Yale University researchers since 2010. The study, called Genes, Reading and Dyslexia — or the GRaD study — operates under the hypothesis that researchers and educators can connect certain genetic variations in children with dyslexia to necessary reading interventions.

Jeffrey Gruen, an associate professor at Yale School of Medicine, directed the GRaD study. He said it has been known for about a century that dyslexia is genetic, but researchers believe they can use new technology to look at a small sample of a child’s saliva and identify reading deficit areas, from phonics to vocabulary.

“The idea is to screen kids who are at risk. The goal of the New Haven Lexinome project is really to see if we can tailor interventions for a specific child,” he said.

Joan Bosson-Heenan, associate director of the Lexinome Project, said that project is a grant-funded reading intervention program that was developed to complement the work being done in the GRaD study and help students who struggle with literacy. The project pays six teacher salaries to work with two cohorts of students at multiple schools — about 200 students who were in first grade in either 2015 or 2016 in the bottom 20th percentile in reading and whose parents consented to having their children offer a DNA sample — for an hour a day to do intense reading interventions from first grade through to 2020.

So far, Gruen said, researchers have begun whole genome sequencing but have not begun analysis. BossonHeenan said the researchers are not manipulating DNA.

The Board of Education tabled the Lexinome Project contract up for discussion Monday, although it was not the DNA testing-specific component that was tabled. A memorandum of understanding was passed in 2017 for the Lexinome Project to test children’s DNA for analysis; on Monday, it was $607,000 for the salaries and benefits of reading specialists who work with students on interventions that was tabled.

Once Goldson mentioned DNA testing on Monday, however, the school board members instantly appeared nervous. Most of them noted that New Haven’s public school population is mostly Hispanic and black, bringing to mind past studies in which people of color were exploited physically, financially and emotionally for scientific advancement.

“We need time to digest this,” said board member Ed Joyner, referencing the famously unethical Tuskegee Syphilis Study that misled black men in Alabama into becoming test subjects to study the progression of syphilis in the human body.

He asked whether families are reimbursed; BossonHeenan said students receive $10 for each of three visits over a year. Goldson said he would want students and families to be better compensated, but BossonHeenan said raising the compensation higher could be coercive, as families might agree to do something for money they otherwise might not consider.

“I’m not even going to respond to that,” Goldson said, as Bosson-Heenan had been explaining to an increasingly skeptical board that the program, which is funded mostly by the National Institutes of Health and private donors, follows federal ethics guidelines.

Joyner said invoking the federal government would not convince him.

“That government has historically betrayed people of color, and the current leader of that government is a throwback to historical times,” he said. “If you’re looking at a genetic basis for this, it should be prevalent throughout the human population.”

Mayor Toni Harp, too, said a majority minority school district must be cognizant of how studies in the past have been conducted under the pretense that people of color are “genetically flawed.”

“To have some sort of look at genetics and reading is troubling,” she said.

Bosson-Heenan said children of color are missing from the literature on genetics and reading interventions, and including them is an intention of the study so the body of research can be inclusive of learners of all races and ethnicities.

“What was really important to us is to look at how intervention works in a real life urban challenge district, because a lot of reseach happens in an ivory tower in ideal situations,” she said after the meeting. “We want to find an intervention that works for kids in even the most challenging situations.”

The largest existing body of research on reading interventions was conducted on over 10,000 children in Avon, England. Gruen said the study was 95 percent white.

“If we base it on only a single population group, it can’t be deployed widespread,” he said.

Superintendent of Schools Carol Birks said she understood the sensitivity of the matter, but “we need to look extensively at what’s being asked.”

Board member Joey Rodriguez said that, even if an MOU exists for the Lexinome Project to conduct genetic research with New Haven students, the school board itself should have its own policy for allowing studies and genetic research with students involved.