DNA-Testing Grant Sparks Ethics Debate

The spirit of Henrietta Lacks entered the cafetorium of Celentano Biotech, Health, and Medical Magnet School Monday evening as the Board of Ed contemplated if it should accept a grant connected to the genetic testing of students.

It tabled action on the grant after a quick but intense debate about historical wrongs committed against minorities by prestigious universities and the government in the name of scientific research.

During its regular monthly meeting, the board debated whether to accept a $607,399.68 grant from the Yale University School of Medicine.

Board members voted unanimously to table the action, after a quick but intense debate about the historical wrongs committed against minorities by powerful institutions like prestigious universities and the government in the name of scientific research.

The spirit of Lacks arrived and rippled across the audience of mostly black and brown staff and community members as soon as Board President Darnell Goldson mentioned the acronym DNA.

That’s because the grant is connected to the New Haven Lexinome Project, which studies the genetics of the common reading disability dyslexia with an eye toward developing a simple and inexpensive test that would help identify it early.

A saliva sample is collected from the children in the study — children who are studied with the explicit consent of their parents, according to the project Director Joan Bosson-Heenan.

A group of New Haven public school children, chosen in 2015 and 2016, have been in the study since they were in the first grade, creating two classes. The partnership, created through a memorandum of understanding between the school district and Yale, has existed since 2010 and has another two years before it wraps up.

Board members raised the kinds of ethical questions that can arise in research particularly when the human subjects are African American.

Board member Ed Joyner said he was concerned that parents and children had a clear idea about what they signed up for and that there were assurances that their genetic information is protected and not used for purposes beyond the stated purpose for collection.

Board President Goldson invoked Henrietta Lacks, pointing out that a lot of people have made a great deal of money from the science and medicine derived from genetic material taken — some say stolen — from her. Her family has never received any compensation.

Lacks was a young black woman and mother of five from rural Virginia. She died of cervical cancer in 1951 after receiving treatment at The Johns Hopkins Hospital.

But a sample of her cervical cells, the HeLa cells — nicknamed for the first two letters of Lacks’ first and last names — taken without her consent and ultimately without compensation, live on today.

The cells have been used to study the effects of all types of disease without further human experimentation. They also played an important role in the development of the polio vaccine.

Bosson-Heenan might have said more about Lacks if she’d had the chance. She’ll get to say more in a fuller presentation to the board’s Teaching and Learning Committee.

“The Immortal Life of Henrietta Lacks is actually required reading for all of my researcher assistants,” she said after the meeting.

Bosson-Heenan tried to explain to the board that the study isn’t a free-for-all to test children’s DNA or to create some type of drug. She said the scientific community already knows that 60 to 80 percent of one’s reading ability is determined by genetics. What the study aims to find out is if early diagnosis and high quality, early intervention can help those students who are known to be genetically predisposed to struggle most in learning to read.

But Goldson said he wanted to make sure that parents and children involved in the study are benefitting financially too.

“Researchers are benefitting,” he said. ​“The school system is getting $600,000 — we’re all benefiting.”

Bosson-Heenan said that the federal government has strict rules about not paying research subjects so much money that they feel coerced into participating. She also tried to assure Joyner that federal regulations about data collection on humans are particularly rigorous.

“You can’t wave the flag of the federal government to cover the historic betrayal of people of color, particularly black people,” responded Joyner, who’d invoked the atrocities of the Tuskegee Syphilis Experiment. He also questioned how necessary it was to take samples from a school district that is predominantly black and brown when dyslexia is prevalent in the human population, regardless of race.

Mayor Toni Harp said that given the historic use of testing to portray African Americans as genetically flawed or inferior, it was discomfiting to her as a leader of a minority-majority city and not be clear on the parameters of such testing.

Fellow board member Joey Rodriguez pointed out also that a memorandum of understanding is no substitute for the district having an explicit policy regarding school children and research.

“I am uncomfortable that there is not a policy in place,” he said.

Superintendent Carol Birks said though she’s been in her role only a short time, she’s gotten a number of requests from researchers to study New Haven school children and she’d like to have something in place.

“I understand the sensitivity of the community on this issue,” she said.

Bosson-Heenan said after the meeting she takes seriously the concerns that were raised Monday night. They are the kinds of concerns that already govern how the project has been carried out thus far.

She also noted that the money provided to the school system from the project pays for the types of high-quality early intervention that’s needed to help those children who truly struggle to read — services the district can’t otherwise afford.

“I take very personally the history of research particularly with African Americans,” she said. ​“We have extensive conversations about the importance of respect. We’re very, very clear that we don’t want to take advantage of anyone. And we really want this to be a partnership with New Haven Public Schools and families.”