DNA-Testing Grant Approved, With Caveats

The school board will allow Yale University continue with a study on students struggling to read, but tighter rules will be in place for any future research.

That’s just one of the conditions that the Board of Education attached to the agreement with university researchers before voting to accept a $607,000 grant from the university at Monday night’s board meeting.

The grant money funds salaries for six teachers and materials for two reading intervention programs.

Their vote will allow the New Haven Lexinome Project to continue studying the genetics of dyslexia in pursuit of a reliable test that can identify the reading disability earlier, when targeted interventions are far more likely to be effective.

With their parents’s explicit consent, roughly 450 children in the bottom quintile at four New Haven elementary schools already gave Yale’s team a saliva sample for their DNA to be mapped. But when school board members learned about that genetic component two weeks ago, they unanimously voted to table the agreement, amid concerns they’d be enacting yet another extortion of racial minorities that’s recurred throughout America’s medical history.

On Monday, the study’s principal investigator showed up at Celentano School to answer board members’ questions. Jeffrey Gruen, a professor at Yale School of Medicine, tried to clear up any doubts about his motives and show the boost in reading scores already, halfway through the five-year intervention.

Gruen said that nearly 60 students at risk of dyslexia had such low test scores that they were a whole standard deviation below what’s expected of first-graders. But a year later, after receiving the Empower module, a reading intervention developed at The Hospital for Sick Children in Toronto, test scores shot up, surpassing those at other schools who didn’t receive the intervention by 32 percent, he said.

Later on, Gruen will compare those outcomes with genetics to see if a simple swab of the mouth can help assign future interventions. That’s important, he said, because there’s so many ways dyslexia manifests itself, from trouble sounding out letters to comprehending definitions, that at-risk students need a tailored intervention.

Board member Ed Joyner questioned why DNA testing was necessary to get to that point. Why couldn’t Gruen use the existing research, compiled over the past half-century, to figure out what children responded to? Does a DNA test pose a danger of becoming a ​“self-fulfilling prophecy” that dooms some children to being seen as ​“genetically limited”?

A DNA test, Gruen responded, is necessary for the one-quarter of students below fourth-grade who still don’t seem to improve even with today’s most effective interventions, plus the three-quarters of students diagnosed with dyslexia past middle school who are too late to be helped.

In a written report, Gruen also noted that the study’s sample size is too small to draw any specific conclusions about racial subgroups from the study.

That still didn’t sit right with Tamiko Jackson-McArthur, an African-American pediatrician whose child is dyslexic. Even though she found the experiment problematic, Jackson-McArthur said she’d vote to continue the grant, as long as future research was vetted more thoroughly.

“If this study was brought to me four years ago for a child that I knew had dyslexia, I would have refused a protocol that required me to give her cells,” she said. ​“I don’t have the comfort in the research history, on the backs of black and brown people, to rely on it. We know that the history of research in our community has been void of communication, void of humanity: doing experiments on black women because we don’t have ​‘pain receptors’…, knowingly giving diseases to black and brown people then sending them out to continue to be sick…, radiation research….

“What they’re doing for the children doesn’t bother me. What bothers me is that we got to this point. I’m hoping that that in the future any protocol brought to the New Haven Public School system — whether I’m sitting at this table or not — is vetted, not just by an outside [institutional review board] but by a New Haven school committee,” she went on. ​“I am going to vote for this protocol. But it’s not because I’m 100 percent backing how it was put forth. It’s because I know that there are minority children definitively benefiting from this and I know the struggles of a dyslexic. But there are things we need to do.”

After that, Darnell Goldson proposed four amendments to the contract.

1. An independent committee will brief all public school parents before they sign their children up for any studies.
2. Language on student data privacy from a state law passed in 2016 will be added to the memorandum of understanding with Yale.
3. Gruen to go back to his institutional review board to see if he can pay families more than $10 per reading assessment, without violating federal rules that prohibit paying so much money that research subjects feel coerced.
4. Superintendent Carol Birks will develop a plan to sustain any effective reading interventions after Yale’s money runs out in 2020.

With those conditions attached, the contracts passed decisively. Only Joyner voted in opposition.