DNA-Testing Grant Sparks Ethics Debate

Markeshia Ricks PhotoThe 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.

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.”

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posted by: WildwildWestEducator on July 10, 2018  4:17pm

You have got to be kidding! Here we go again. Chasing the grant money and the children suffer. If this has been going on for years, why has this not been made public before? I hope that they say no and stop what they have done. They have bigger problems

posted by: Seth Poole on July 10, 2018  4:20pm

Hell NO!

posted by: Not Worthy on July 10, 2018  4:28pm

If this is such an awesome program, they should try testing a couple of cohorts of students at a private school in, say, Darien first. If that goes well, then have them come back to New Haven and share some of the results.

posted by: CamilleS on July 10, 2018  4:34pm

Does Yale also sample kids from private schools, or just the public school system that’s desperate for funding? I can’t really imagine Foote or Hopkins signing off on something like this, since they’re not in such a crunch.

posted by: Samuel T. Ross-Lee on July 10, 2018  4:43pm

Yale is constantly looking to study, test, survey, or otherwise probe into the lives of Black people in New Haven.  We should not allow such a thing in our schools. 

Rev. Ross-Lee

posted by: FacChec on July 10, 2018  4:49pm

“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. However, Bosson- Heenan presented no evidence that the parents of the children currently participating were actually the parents and that approvals were signed that none of the DNA collection would be disclosed shared with other scientific organizations.
Goldson sighted Henrietta Lacks; HeLa does not exactly fit the DNA profiling this grant seeks to obtain.

“The doctors at Hopkins pressure Day into allowing them to autopsy her in order to study her cells further. Her family buries her in an unmarked grave. HeLa continues to thrive, aiding researchers in creating a polio vaccine, and leading to the first ever operation to mass-produce human cells. Scientists begin using the cells to study viruses, human genetics, drugs, environmental stress, and vitamins. Journalists begin wondering about Henrietta’s identity, and eventually an article is written about her using the wrong name: Helen Lane.”

https://www.litcharts.com/lit/the-immortal-life-of-henrietta-lacks/summary

Nevertheless Goldson said he wanted to make sure that parents and children involved in the study are benefiting financially too. “Researchers are benefiting,” he said. “The school system is getting $600,000 — we’re all benefiting.”
Question: So just what is the school system doing with the $600K, Goldson offered no insight into this so called benefit? Dr. Birks appeared in favor of this grant, it appears she is more extroverted into the long range benefits for children as long as proper private personal information is ensured.
“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 in minority-majority city to not be clear on the parameters of success.” Harp presented no evidence of her claim.

posted by: 1644 on July 10, 2018  5:08pm

Wildwest: How do the children suffer?  It’s a simple cheek swab, then early educational intervention.

Camille:  Foote would be good, but I wonder about the sample size and stability of the student population (how long do students stay at Foote or NHPS where they can be tracked?). Hopkins, of course, doesn’t start until grade 7/first form, and, being selective, probably has few dyslexic students.  Darien or Wesport likely have more stable populations than NHPS, but are farther from Yale.

posted by: Samuel T. Ross-Lee on July 10, 2018  5:17pm

@1644,

Wrote “Darien or Wesport likely have more stable populations than NHPS, but are farther from Yale.”

It seems highly improbable that an institution that has amassed billions of dollars in endowment has the ability to travel to a city and school that exist within the same state as said institution, doesn’t it?

Rev. Ross-Lee

posted by: NHPLEB on July 10, 2018  6:07pm

No more using NH children and adults as guinea pigs!!!  It has horrifying connotations of the experimentation done in Nazi Germany and other countries during the last century.

Please don’t do this!!

posted by: 1644 on July 10, 2018  6:22pm

Rev. Ross-Lee, First Yale’s institutional funds and its research funds are different colors of money.  The endowment is not used directly for research, grants are, and the use of grant money is severely restricted.  (Most endowment money is restricted used for things like scholarships, particularly at the College.). Second, I am sure the researchers could drive down the Turnpike, but it wouldn’t be as convenient for them.

  As for the $600K, one would hope the BoE would use it for enhanced services for students identified as dyslexic.  These students may directly benefit from the research as may future students with the dyslexic gene.  Students without the gene, of course, will suffer the cheek swab without any benefit whatsoever!

  Regarding HeLa, the idea of medical research as a way to get very rich dates from the mid-seventies.  Prior to that, research on public health problems like polio, measles, etc., was funded by private philanthropy and the federal government.  Scientists and doctors generally earned okay money, but never got rich like today.

posted by: Jill_the_Pill on July 10, 2018  6:32pm

1644 wrote:

>>> “How do the children suffer?  It’s a simple cheek swab, then early educational intervention.”

The early educational intervention is great.  But, we should all be more aware of the potential for harm in aggregated data and analyses.  If a study labels a family, classroom, school, community, race or ethnicity as somehow at-risk or deficient in some way, there can be a stigma that attaches to and harms the individuals within that group.  Human nature tends to assume, wrongly, that individuals have the characteristics associated with the group’s numbers.

Further, would you want your entire genome stored somewhere indefinitely?  We don’t know what future uses it may be put to.  NHPS could protect its students by implementing and enforcing a policy that requires the complete deletion of all data, including backups, at the end of any study or contract.

posted by: JCFremont on July 10, 2018  6:48pm

I think many school systems and parents would be interested in this type of study. It’s a swab of saliva they are not extracting brain matter. I don’t think a trip to Darien or Westport is needed, I think using samples from schools from the valley to Madison would be a stable group.

posted by: 1644 on July 10, 2018  7:50pm

The Amity district likely has a less transient population than NHPS,  and is nearly as convenient as NHPS.  Generally, wealth means more stability (no evictions, fewer job loss moves, etc.).  As the study is already 2/4 down in NHPS, however, I am not sure a population shift is feasible.

Jill: I really don’t care if my genome is stored somewhere.  If a genome or tissue sample from me could help advance knowledge 50 or 100 years from now, as with Ms. Lacks,  I think it would be great.

posted by: Jill_the_Pill on July 10, 2018  8:45pm

1644, what if in a decade it becomes commonly used to raise your insurance rates based on genetic risk factors?  These children have so many years ahead of them, we can’t imagine future benefits and evils.  It is at least a risk.

posted by: Samuel T. Ross-Lee on July 10, 2018  9:41pm

1644,

You CLEARLY missed the dripping sarcasim in my statement.  Mine was not a statement about how or why Yale uses its endowment. 

But, surely a university with that much money can find some to fund a trip to Darien. 

Secondly, you seem committed to the notion that the students and parents have an obligation to make Yale’s research projects easier to perform.  Allow me to inform you that we do not have such an obligation.

Rev. Ross-Lee

posted by: Asha on July 10, 2018  10:36pm

https://www.newhavenindependent.org/index.php/archives/entry/conference_launches_dyslexia_awareness_initiative/

Here is just a peak into what this is really about. Our children are still being under diagnosed and labeled inappropriately, not receiving the interventions they deserve. Research states that many dyslexic students are extremely intelligent.They have a coding issue. Instead we distorted the issue and are BLOCKING our children receiving help. No one is discounting the wrongs of the illegal and immoral projects that have been prior to our people. This is not one, this is voluntary and is in hopes to recognize what may impede our INTELLIGENT children from moving forward in their education.

White parent in many areas have participated in these studies, some right down the street in independent schools. Please do better research. They have stood up for their children, fighting for them not to be labeled “lacking in intelligence”.

This is the wrong fight. Please stop blocking our children from receiving the help they deserve. Better yet read what Harvard researches say- Early intervention is best. Seems like the support given in this partnership moves us forward, not holding us back because the of latest ploy to separate our children from success under the banner or misplaced righteousness. https://www.gse.harvard.edu/news/uk/16/06/fixing-failure-model

posted by: 1644 on July 10, 2018  11:16pm

Jill:  We have outlawed such use of genetic data, as well as outlawing pricing insurance by pre-existing conditions, which is little different than using genetic data:  both price insurance according to risk.  John Rawls would approve.
    In any case, I am not so fearful of the future as you.  Horrid things have happened in the past, yet man moves on.  I do not fear knowledge, nor do I think suppressing knowledge is helpful to mankind.

posted by: robn on July 11, 2018  6:31am

Good caution but a simple policy can be put in place based upon this very Q&A to avoid exploitation (which these researchers are acutely aware of so please pile, stop posturing.)
1) it’s a simple cheek swab
2) the data at will be anonymized
3) the data will ultimately be used to help all children
4) there is financial compensation for the children through their school system

posted by: darnell on July 11, 2018  6:53am

The $600K is us do to pay 6 or 7 teacher salaries in those schools.

posted by: Asha on July 11, 2018  6:59am

Lastly, come on New Haven. If the project has been here for the past 5 years who do you think voted it in. The same three must have. They are BOE members and this was not the first time this came to their desk. Why now…..hmmmm. Please don’t fall for false prophets. We are better than this. The only one with a concern here is the Superintendent who has shed the light on our board who runs with no clear policies. Are they afraid she will expose them for who they are and this was a very sensitive subject for our community, so why not play the hand. I hope we are not seeing our own community members dealing out “fake news”. Again, who voted yes- can be found in the notes 2017, 2016 etc.

posted by: 1644 on July 11, 2018  7:57am

Robn:  For this project,  the data will be used to see if children with dyslexia can benefit from early intervention.  The swabs are being used to identify those children who may benefit.  My wife is dyslexic, as is her father, although her four siblings are not.  Would early intervention have prevented her from being held back a year due to her dyslexia?  Perhaps.  If so, it would have saved her the loss of her cohort of childhood friends. Genetic testing would have allowed the school system to know that, although her father was dyslexic, her siblings were not so nothing special was needed for them, but that my wife was, and she might have gotten the help she needed and avoided repeating a grade.
    Somehow, folks here seem to think that is a bad thing.  Moreover,  many think if data collected for a dyslexia project were later analyzed to help those with, say,  ADD,  that would also be a worse thing,  as it would be a bait and switch.  Hey, you told us this would help kids with dyslexia,  and we were okay with that, but we never said you could help kids with ADD!  Horrors, just as it’s bad that HeLa cells were used to prevent polio, as well as for things not though possible when the original cells were taken.

posted by: Hogieshack on July 11, 2018  8:10am

“federal regulations about data collection on humans are particularly rigorous“...Phooey!
Parents better be caught up on FERPA, Family Education Rights In Privacy Act. Obama Admin. Changed regulations in 2012 allowing Personally Identifiable Info, PII, including DNA STRANDS) ) to be shared without parental consent. So Yale has been doing experimental research for 5 years. So, there is more to this story than what you’re reading. Yale is going to go beyond what was proposed originally. And, parents have signed off on this. (FERPA Loopholes here: https://drive.google.com/open?id=1bCGeZDtRi_Lm-xpfTswTR_LkPBV82nrv )

Parents should request the MOU between Yale & their school to see exactly what they’re doing. They should get an attorney. Collecting data is one thing…interventions are a whole new ballgame. What type of intervention is Yale going to do with DNA?  After all, they are not talking about a reading specialist.  This is highly controversial & I’m sure it is marketed to parents as “helping their child.”  Has there been any disclosures of harm or future implications with something goes wrong?
Let’s talk about a new word that no one seems to connect with this research..Eugenics.

This is plain & simple….research on minorities with gene altering research.

Don’t let them do it, Parents!

posted by: Samuel T. Ross-Lee on July 11, 2018  8:14am

EducatedParent,

Apparently, you don’t understand what happens to people, when they have been misused and abused many times.  If you are “educated” as your name suggest, you will know that the issue here is one of trust.  You will also know that trust broken cannot be repurchased with $600K. 

History is not a “false prophet.”  History is the best information we have about the past. We study and learn history to help keep us from making the same mistakes and missteps that we made in the past. 

There is ALWAYS a good reason to listen to and follow a confidence game. That’s why it’s called a confidence (con) game.  Those reasons can never be used to rebuild trust, as they were the same reasons upon which the trust was built in the first place and then violated. You and others keep telling us how the research will be used, but, how do you know that?  What absolute assurance do you have that the information gathered will only be used for the stated purposes and nothing else? What methods are in place for each and every person whose DNA is used in the research to hold Yale accountable if the gathered information is not used as proposed? Can one make a reasonable argument that the reason Yale is going through the BOE and not to individuals because if they misuse the gathered information that they will not have to adjudicate the misuses through individual lawsuits or reparations, but can just pay off the BOE that always seems desperate for money?  I believe they can.  And is it a coincident that Yale comes to the BOE now, knowing that they are experiencing a significant deficit?  Perhaps. All of these questions are legitimate ones, and they remain unanswered by your rant that those of us who oppose this research on our children are being unreasonable.   

Finally, the fact that your true identity is hidden does not engender trust. You could be an employee of Yale who has a vested interest in this research and not a member of our community at all.

Rev. Ross-Lee

posted by: Asha on July 11, 2018  9:01am

Dr. Ross Lee

You have my respect. I know you are sincere and are speaking from a point of belief and with integrity but stop and read closely this project has been stated to be here in New Haven for over 5 years. This is not a now give away. That statement will mislead and understandably cause concern. The board has signed an MOU and has voted this in year after year. I can trust now you will take pause and share why you think it became a problem this week. Who really is being disingenuous. Our board? If our belief that this is really wrong should we not be putting the Board in the seat of being responsible year after year and ask them how they are sleeping at night knowing that they signed off and yet today led a whole community believe they never knew! I hope the community gets a chance to hear just how this project started, where they are in the project in terms of testing, and if in fact the only thing we take away now from our children are services that support them in reading.

The political climate in our own city is hard to be transparent in, safety not trying to be untrustworthy. Wish I could be more like you.

posted by: Westville Kathy on July 11, 2018  9:22am

Does the almighty $600,000+ in “benefits” outweigh the value of New Haven Public School students? Fortunately, some Board members recall some horrific histories and chose to protect the integrity of our young. Thank you to them!

posted by: Molly W on July 11, 2018  9:39am

There seem to be so many issues that should pump the breaks on this approval. First, why doesn’t the BOE know that this study is currently underway in our city? Probably because the 2010 superintendent and assistant superintendent made this deal without any further discussion and proper approvals (there are other examples). And how did this get instated without the immediate creation of a NHPS research policy statement? Probably because for years a lack of policy and transparency made so many things possible without the BOE’s knowledge, consideration, or approval.

Most importantly, Yale has a long history of researching and surveying New Haven’s communities of color and it’s rightfully left many residents betrayed. We must listen to our real community leaders on this so we can stop that from happening again. There are some good partnerships underway between Yale and communities of color and what makes these successful is that the research isn’t exploitative and is led by the community members.

If this study is something that could be OK, why not have an opt-in outside of schools? Yale can certainly pay for this publicity. It seems that approaching parents in school settings, in a district riddled with problems, taps in to a vulnerability that shouldn’t be exploited. The parents in NHPS are rightfully anxious right now. What is the direction of our schools? Who has the power? Will the schools receive proper support to help those that need it most? This study has the potential to make a pitch that taps through these anxieties - instead of starting at a neutral place. 

@ Jill_the_Pill, I agree with your comments. Thank you for sharing them.

posted by: 1644 on July 11, 2018  10:16am

Rev Ross-Lee:  You are correct, NHPS is not obligated to participate in this study.  It can reject the grant, lose the opportunity use an objective genetic data to identify students in need of extra help.  Yale can just go to Amity or North Haven or Branford.

Hogie:  I am pretty sure the intervention spoken of is reading specialists, who would work with kids according to their IEP developed with the schools and parents.  Parents would be called into a conference, told their child, based on genetic and written tests, and family history, is at high risk of having dyslexia.  Parents would then be offered enrollment in special education programs in the hope that they prevent their children from falling behind in reading.

posted by: Jill_the_Pill on July 11, 2018  10:32am

Can I just say how happy I am that we are having this conversation about children’s data privacy?  Hogieshack is completely right about FERPA, but Hogie, they /are/ in fact talking about reading specialists, not altering DNA.

1644, I am glad you have such faith in the immutability of our laws.  They’d never pull that pre-existing condition rule, would they?  It’s not about suppressing knowledge; it’s about recognizing that there are collective risks that come along with data analysis, in addition to the obvious individual ones.

posted by: RHeerema on July 11, 2018  10:54am

“Bosson-Heenan said that the federal government has strict rules about not paying research subjects so much money that they feel coerced into participating.”

Such rules are not in place to protect impoverished school districts.

posted by: Samuel T. Ross-Lee on July 11, 2018  11:21am

@EducatedParent,

“I can trust now you will take pause and share why you think it became a problem this week.”  It became KNOWN this week.  If the MOU was signed five years ago, then THIS board didn’t sign it.  The present board, in its totality, did not exist five years ago.

A Memorandum of Understanding is just that.  I’m not even sure if it’s a legal document, but if it is, it’s a statement of the two parties’ “understanding” of what is supposed to occur.  That does not mean that the understanding will be followed, or that the people who agreed with the memorandum will be around to enforce it in years to come. 

Once the university has the DNA, who from the city will be in any kind of position to monitor that Yale is doing with it what they say they would?

Yes, I do operate from a hermeneutic of suspicion when it comes to institutions and politicians using resources from us to benefit them, in the name of helping us.  Based on history, for this, I will not apologize. 

The Rev. Mr. Samuel T. Ross-Lee

posted by: Scientista on July 11, 2018  12:44pm

There’s an awful lot of misinformation and fear-mongering going on here. I’d like to urge everyone to please click the link to the study (above) and read through the information.

I’m ashamed for the city officials who (it appears) weren’t able to effectively explain this study to parents. It’s also pretty clear to me that the researchers haven’t done an effective job of explaining the goals and methods of their study because it’s not clear that anyone has any idea what they’re actually doing and why.

This is important and interesting research into dyslexia. I assure you all that there are many, many studies like this being done and they’re uncovering the causes of diseases and conditions such as autism, cancer, and many more. This research has the potential to help many kids and their families. Please- educate yourselves. Ask questions. Be informed.

posted by: FacChec on July 11, 2018  1:25pm

From the New Haven Leixinome project:

Participation  
Any child enrolled in the 1st grade in New Haven Public Schools during the 2015 and 2016 school years is eligible for participation.

Parents will be asked to complete a questionnaire about their child and family history.  A saliva sample will be collected from your child. Then your child will receive a series of tests, similar to the standardized tests he/she gets in school.

Says nothing here about privacy protections.

Below is a list of the schools participating in this project.

Augusta Lewis Troup School
Banard Environmental Studies School
W. Beecher Museum School of Arts & Sciences
Benjamin Jepson
Betsy Ross Arts School
Bishop Woods School
Brennan Rogers School of Communications & Media
Celentano Biotech, Health & Medical Magnet School
Clemente Leadership Academy
Clinton Avenue School
Columbus Family Academy
Conte-West Hills
Davis Street Arts & Academics School
East Rock School
Edgewood School
Elm City Montessori School
Engineering and Science School
Fair Haven School
Hill Central School
John C. Daniels School of International Communication
John S. Martinez School
King-Robinson Inter-District Magnet School
Lincoln-Bassett School
Mauro-Sheridan Science, Tech. & Comm. School
West Rock Author’s Academy
Nathan Hale School
Quinnipiac Real World Math STEM School
Ross Woodward Classical Studies School
Truman School
Wexler- Grant School
Worthington Hooker School
Wow didn’t know all these schools were already participating and until 2020 by the agreement. more tan 7 teachers involved

The GRaD Study uses a saliva (spit) sample to collect DNA. The human mouth offers a large number of rapidly dividing cells for examination. We will collect saliva by asking the subject to spit into a collection tube. We only need a little bit of saliva, about 1/2 teaspoon. We will compare these results to family history and reading test results in order to get a better picture of what gene variations are related to reading ability.

posted by: Samuel T. Ross-Lee on July 11, 2018  1:40pm

Scientista,

Maybe you should stop assuming that people are ignorant. And accept the fact that there is historical reasons for African-Americans to distrust white institutions using us for scientific research.

posted by: Molly W on July 11, 2018  1:51pm

Yo Salovey and Yale Corp., how about you increase Yale’s annual “voluntary contribution” to New Haven to an amount that truly matters and then we can talk? If you want to engage in ethical studies, then let’s see an ethical contribution. The amount Yale makes in interest for three days would lift our schools out of emergency and provide the equitable funding and attention that they all deserve. Let’s have a reality in which selling children’s genomes isn’t considered a fix to our public school budget conversations.

posted by: Asha on July 11, 2018  2:55pm

Rev. Ross Lee

I did look at the posted minutes for the BOE. On Aug. 28, 2017 and Aug. 22, 2016 this BOE voted on these agreements and passed in public forum. Monday was not the first time you were made aware along with some in attendance.  I agree this has not been shared appropriately.

posted by: Samuel T. Ross-Lee on July 11, 2018  3:47pm

@EducatedParent,

I will not apologizing for not perusing all BOE minutes or for not attending all of their meetings.  I am speaking on this for the first time, because this is the first time that I’ve known about this.

Is it important when we engaged this topic?  Are our concerns no longer legitimate and we should not be heard because we didn’t enter the discussion at the exact time that you think is appropriate?

How does that work, anyhow?  Is someone assigned to determine when it’s too late to talk about an issue? What is the cut-off time? 

Rev. Ross-Lee

posted by: darnell on July 11, 2018  4:14pm

@Educated Parent

I won’t get into a drawn out debate regarding the pros and cons of this project, we’ll have a chance to have spirited information driven debate do so at the BOE in the near future. I just state a few things below.

August 22, 2016 only three members of the current Board were on this Board, Joyner, Goldson and Harp. The bulk of the discussion at that meeting was regarding the superintendent’s evaluation and contract.

August 28, 2017, only one member of this current board was at the meeting, Joyner.

This was presented as a grant and a study. No one knew that DNA was being drawn, at least I didn’t, and Harp and Joyner both said they were not aware of it.

Though this may have slipped by us in the past, what difference does that make now? Just because a mistake was missed previously does not mean that it shouldn’t be corrected once identified. We are now aware of it and have questions which need answering. Additionally, in 2016 the state passed a new law about sharing student data, which does not seem to be incorporated into the MOU, which none of us have seen as of yet.

And I agree with Rev. Ross Lee, you have too much insider info, you appear to be an insider, more likely a NHPS employee than a Yale insider. You went back 2 years through 48 or so sets of minutes to “find” the right minutes. Not likely.

posted by: elmcityale on July 11, 2018  4:25pm

One can learn from history and be suspicious of intent and impact, while still accepting valid arguments to the contrary for a given medical study or situation.  There is tremendous potential benefit for children from such studies.  I hope rational minds will prevail, asking important questions, assessing the answers, and if this opportunity is as good as it seems, then proceeding.

posted by: AnnieMac on July 11, 2018  4:57pm

This is Orwellian.  If Yale is going to use DNA, then it should be approved by the district’s IRB.  Furthermore, since Yale has so much to gain, each child who participates in the study, whether they are a control or a treatment, should be given a 1000 dollar savings bond.  This should be done after the parents have a face to face orientation and sign off.  Then the district may begin discussions.  If the district is compensated witll 600k per year and the families of the
DNA donors get nothing, then this is a terrible injustice. 

I think the Reading Supervisor, Lynn Brantley has used very poor judgement by getting involved in this science fiction.

posted by: Jill_the_Pill on July 11, 2018  5:14pm

Annie, I don’t think the district has an IRB board, but Yale does.  The problem is that education studies are generally exempt.

posted by: John Champion on July 11, 2018  5:37pm

Why DNA testing? Dyslexia can be diagnosed using several tests developed by reliable organizations:


Evaluating a Child for a Dyslexia Diagnosis
Children at risk for significant reading problems can be identified as early as kindergarten.  According to the International Dyslexia Association:

“It is possible to identify potential reading problems in young children even before the problems turn into reading failure. Screening tests, such as Predictive Assessment of Reading (PAR); Dynamic Indicators of Basic Early Literacy Skills (DIBELS); Texas Primary Reading Inventory (TPRI); and AIMSweb screening assessments, developed by researchers for those purposes should be used with all children in a school, beginning in kindergarten, to locate those students who are “at risk” for reading difficulty. Preventive intervention should begin immediately, even if dyslexia is suspected.”

I agree that it is important to diagnose and intervene dyslexia in order to provide our children with the best possible education and opportunities. But why DNA?

Extracting and cataloging DNA will have that DNA eventually housed in a national data base at the service of the national security state. Collecting 1st grade DNA is one more loss of privacy and will be even more costly than the inevitable denial of insurance for preexisting conditions. It is one more loss of individual liberty.

posted by: robn on July 11, 2018  5:40pm

ANNIEMAC,

The $600K goes to education which means it goes to the kids. If this gets bounced, please be prepared to cut another $600K from education because other taxpayers don’t want to foot the bill for parents paranoia.

posted by: Samuel T. Ross-Lee on July 11, 2018  5:57pm

AnnieMac,

A $1000.00 Savings Bond???? Do you, and some others I’ve read here, assume that African-American New Haveners are ignorant to the potential benefits to the university for the information that they will take from these children?  A DNA swap is a person’s entire life in miniature. Access to said information and what it might be used for with it, far beyond the “understanding” in the MOU, is massive.  And you think that’s worth only $1000.00.  And, why a savings bond?  I’m sure Yale’s money will not come to them that way.

Now, whose being Orwellian?  I say you are.

Rev. Ross-Lee

posted by: fairhavenkerry on July 11, 2018  8:33pm

I’d like to share my experience with this particular research project, as my children are participants. We attend Elm City Montessori School here in New Haven, where we are residents. I’ve found the study to be helpful to my kids, who’ve been assessed on their reading and comprehension skills beyond the usual evaluations they’d get each year and that information has been provided to us as parents. We received a lot of information at the time of signup, making clear what we were participating in, how samples were managed and that our children explicitly could not participate without parental permission. I recognize the grave, violent historical injustices perpetuated against people of color in the name of research in the past. I do not excuse those, condone or wish to take light any of the concerns raised here. The article, however, does not make clear that the presenters who run the research were given time to fully address all of these concerns. As spirited as the debate is here in the comments, I’m not sure how much of it is actually based on the facts as they relate specifically to this research project. I hope that the Lexinome Project staff can be given time at the Committee meeting to address these points at length, because the opportunity to make broad progress in addressing dyslexia, the incredible impact that can have on all children and the interventional opportunities for our students specifically, related to the grant in question, shouldn’t just be thrown out the window. I’d also like to add that this project has been implemented since 2015 and in existence/partnership with NHPS since 2010 – there are 31 schools participating and yet our BOE is just now learning/recognizing/reacting to this arrangement? I think that needs to be further examined.

posted by: FacChec on July 11, 2018  8:43pm

posted by: darnell on July 11, 2018 4:14pm

“This was presented as a grant and a study. No one knew that DNA was being drawn, at least I didn’t, and Harp and Joyner both said they were not aware of it.”

Though this may have slipped by us in the past, what difference does that make now? Just because a mistake was missed previously does not mean that it shouldn’t be corrected once identified. We are now aware of it and have questions which need answering. Additionally, in 2016 the state passed a new law about sharing student data, which does not seem to be incorporated into the MOU, which none of us have seen as of yet.


Darnell you said “what difference does it make now?

This will make the fourth MOU that has slipped by!!

NEW HAVEN BOARD OF EDUCATION MEETING – JULY 9, 2018
1. New Haven Lexinome Project, in the amount of $607,399.68, for 2018-2019. Funding Source: Yale University School of Medicine

BOARD OF EDUCATION MEETING – AUGUST 28, 2017
2. New Haven Lexinome Project, in the amount of $643,765, for FY 2017-18. Funding Source: Yale University School of Medicine

BOARD OF EDUCATION MEETING – AUGUST 22, 2016
3. Continuation Programs New Haven Lexinome Project, in the amount of $575,000. Funding Source: Yale University School of Medicine

BOARD OF EDUCATION MEETING – APRIL 27, 2015
4. New Haven Lexinome Project Grant, in the amount of $520,000. Funding Source: Yale University School of Medicine

Darnell student rights:
State Law
Connecticut Public Act 16-189 – In the spring of 2016, the Connecticut General Assembly passed public act 16-198, An Act Concerning Student Data Privacy, to provide additional protections for student data.  Specifically, the bill requires boards of education to enter into a written contract with a contractor any time the board of education shares or provides access to student information, student records, or student-generated content.

https://portal.ct.gov/-/media/SDE/Performance/Data-Collection/PublicAct16-189.pdf?la=en

posted by: darnell on July 11, 2018  9:33pm

Fachec,

Six of the 7 members, including me, were not on the BOE in 2015.

2016- it slipped by me and others because we were fixused on the Supt contract and evaluation

2017 - 2 of the 3 current members were not in attendance at this meeting. Again, slipped by or supported by bird members who are no longer on the board.

2018 - has not slipped by because we are currently debating that grant.

Student info contract - you failed to quote the entire section of the law, which calls for a written contract with specific points to follow. We currently do not have that contract as far as I can tell.

posted by: Molly W on July 11, 2018  11:36pm

People with various levels of involvement have a lot to say about this study. While I’m wary of Yale’s involvement in New Haven given their riches kept far from our city’s needs; dismayed that there isn’t publicly available information about the genetic data’s privacy, security, retention, and destruction; and appalled by the lack of proper record and research policy… is there a way that the project could be talked about separate from a BOE meeting? Another sort of outreach/information event? The reactions last night and today present important opinions, memories, and questions.

posted by: Samuel T. Ross-Lee on July 12, 2018  12:12am

@fairhavenkerry

Wrote: “As spirited as the debate is here in the comments, I’m not sure how much of it is actually based on the facts as they relate specifically to this research project.”

You’re right fairhavenkerry, the “spirited” debate here is not “based on facts.”  It is based on the fear that we may never know the facts because once the university has our children’s DNA, we cannot control what they will do with it.  You say that you do not “wish to take light (sic) any of the concerns raised here.” But, taking them “lightly” is exactly what you’re doing by not trying to understand what the concerns raised here are.  Simply mentioning the reality of “violent historical injustices” does not mean that you understand the impact of those injustices.  You make clear your lack of understanding of the fears by asking those who are affected by those injustices to “look at the facts. 

Apparently, you don’t understand that facts do not always vitiate fears, especially when those fears and concerns are born of “facts” from times past.  A Joe Friday perspective will not work here.  When the fears justifiably override the facts, we are just beginning to understand the real impact of “violent historical injustices” to which you refer.

Rev. Ross-Lee

posted by: 1644 on July 12, 2018  8:04am

Asha: By “right down the street in independent schools”, I assume you mean Foote?

posted by: fairhavenkerry on July 12, 2018  9:53am

If my comment came across as minimizing or trivializing the historical facts of racial injustice and violence in American research projects, my apologies. But we do all want answers to the questions and concerns raised here, right? I don’t see how the research team was given an opportunity to do that in the meeting on Monday. And I especially don’t see how our BOE was completely unaware of this partnership that has been present in 31 schools for the last three years. To know the grave concerns raised here and then to be told that the grant renewals over the last few years “just slipped by” doesn’t sit right with me.

posted by: darnell on July 12, 2018  11:19am

@fairhavenkerry

Are you suggesting that there may be some sort of mysterious secret underground conspiracy by BOE members related to this project? To what end? I discovered this issue a few weeks ago when I was preparing to attend a finance committee meeting which I may have had to lead because of conflicts of other members.  Quite frankly, when I raised this at the meeting on Monday, I said to my fellow members that wasn’t trying to stop the project, or influence others, but that I would not vote for it. When other members inquired why so, I explained my concerns. None of my fellow members were aware of the DNA testing. Not one. We decided to table this item for another meeting because it was too important an issue to try to decide without a fully discussing. It wasn’t that we ignored or didn’t give the proponents an opportunity to present, we did. But the more they spoke the deeper they dug the hole. They weren’t prepared either.

There is no mysterious hand behind the curtain influencing this process. It is just a group of decision makers determined to have ALL of the information before deciding on a course of action.

posted by: Brutus2011 on July 12, 2018  1:30pm

I don’t like this proposed, or ongoing, DNA collecting activity of our children.

Yale should go to the suburbs to collect DNA samples for their research.

I don’t trust how our kid’s DNA will be used in the future.

And yes, my mistrust is based in the past ....

and also in the present.

posted by: Truth is Truth on July 12, 2018  7:00pm

These discussions are the most ridiculous yet. This project has been going on for over five years. Why now all these concerns? Have we been sleeping or do we just all of a sudden wake up and get intelligent? Can we take back the saliva swabs that have been done? NO!! So, what are we fussing about?  Even if you stop the program, they already have data on the students and they can do whatever with the saliva samples they have, because they paid for it. We have already sold out! Waving the almighty greens seems to send off some kind of crazy reaction in one’s brain that prevents one from being a rational thinker. Do you see how people behave when they get money? People sell their souls for money. This is what happened here. So stop the foolery. The saliva belongs to them. The collected data belongs to them. END OF STORY.

posted by: Samuel T. Ross-Lee on July 13, 2018  12:51pm

@Truth is Truth,

“We” have not already sold-out. Perhaps past boards have already sold us out.  But, “we” were not aware of that.

I always find it curious when people, like you, attempt to shut down discussion.  So what, if we’ve learned the information late and decided to discuss it now.  Freedom of speech does not have a clock attached to the right.  We can speak on the issue whenever we please.  We can also let the current board know that we are not pleased with the idea, or with continuing the idea.

Your point in writing seems to be an attempt to make us feel defeated and that there is no reason that we should continue to engage the issue.  Are you a Yale operative, too? 

Rev. Ross-Lee

posted by: Blue94 on July 15, 2018  7:13pm

Dear Rev. Ross-Lee,

The year is 2018.  Not 1958.  New Haven has a black mayor and black superintendent of schools. Not to mention the hundreds more black people who work in this city as doctors, lawyers, professors, teachers, police officers, firefighters, paramedics, nurses, school administrators ...

You keep clinging to the past as a means as an excuse to not move forward. Fortunately, for the aforementioned black people who refused to make excuses and worked hard for all they have, they’ve come to trust others ... even to what you refer as “white institutions.”

Move on,
Blue94

posted by: Samuel T. Ross-Lee on July 15, 2018  7:38pm

Dear Mr./Ms./Mrs. Blue94,

This is 2018, there is an avid racist in the White House, and open white nationalist running for Congress who are winning elections. I’m a realist.  Yale is dominated and controlled by white people, people who vehemently opposed the removal of a strong advocate of Slavery from an honored position on its campus, and who have frustrated the building of a credible African-American degree program, though the scholar who built the best one in the world is a summa cum laude graduate of Yale. The more things change; the more things remain the same.

The race of New Haven’s mayor or its School Superintendent has nothing to do with the race or the racial perspective of those who run and control Yale University. The number of African-American professionals in New Haven is not a sign of progress, either. It is a reality that should and would have been decades ago, like in 1958, were it not like white institutions like Yale University, blocking their access to quality education all over this nation.

If you wish your child’s DNA to be owned by Yale, then fine. Do that on your own, and not as a part of this city’s government or school board.  I will “move on” when I have complete assurance that I can trust white institutions like Yale, as they refuse to perpetuate its subtle love for white racist, and its blatant dismissal of Black worth. 

Rev. Ross-Lee

posted by: Brutus2011 on July 16, 2018  11:05am

I submit that few black people, or people of color, trust white institutions.

I am well-educated and sometimes I am thankful we didn’t have a boy.

If one fears for the safe return of their black sons when borrowing the car, then how can trust be even contemplated?

Look, we still live in an apartheid and racist society.

I am hoping Trumpkkk’s election and the surrounding drama will energize enough young citizens to choose to embrace each other as fellow Americans and stop listening to the divisive cow-pucky that the elite still blinds the rest of us with.

And by elite, I’m not talking about those with Lamborghini money.

I’m talking about space-ship money.