Now that New Hampshire has a law (signed by Governor Sununu in 2017) that requires informed written consent from parents/guardians before a school district can administer a non-academic survey, I wanted to share an e-mail exchange between a professor at the University of New Hampshire and myself regarding a survey that is going to be given to students in Keene.
I started by sending a “right to know” request to the Professor at UNH and administrator at the Keene School District.

These emails were copied to administrators and school board members in Keene, the NH House and Senate Education Committee members, Commissioner Frank Edelblut, members of the State Board of Education, a child psychologist, and a couple of NH’s media reporters:

Who’s looking out for your children?

 

1)
On Wed, Feb 7, 2018 at 9:54 PM, Ann Marie Banfield <[email protected]> wrote:
Dear Ms. Baker and Dr. Baynard:

In accordance with RSA Chapter 91-A, please provide the following information:
1) A copy of the CAMI which includes ALL questions on the surveys.
2) The ethical guidelines the school district and UNH will follow while conducting research on the students who participate in this survey.
3) According to the APA’s ethical guidelines on researching children, they require the following ethical guidelines (listed below).  Will UNH and the school district follow these guidelines throughout the process?
4) Will the research subjects receive any compensation for their participation?
5) Any documentation that has been provided to the parents and/or children regarding “potential risks”
6) If the parent/child has been fully informed on potential risks, have they then been asked for their participation in this research?
7) How consent from parents will be, on an ongoing process.
8) Any documentation on a privacy policy.
9) The privacy agreement between UNH and the school district, and the protocol if there is a breach of personal student data.
10) How students will be tracked with the surveys.

Sincerely,
Ann Marie Banfield
Education Liaison, Cornerstone Action

·  Make consent an ongoing process. Asking the parent to sign a form does not equal informed consent, they say. Investigators should keep parents informed at every step in the study, giving them the opportunity to voice their concerns throughout.
·  Consider alternative forms of payment. Cash isn’t automatically the best form of compensation. For example, parents who would have to miss work to drive their children to the research site might be more inclined to allow their children’s participation if investigators use flexible scheduling or even provide transportation. In addition, sizable checks can blind parents to the potential harmful effects of research, the authors note.
·  Communicate with the child. Procedures and potential risks should be explained to children according to their age and cognitive development
·  Request the participant’s assent. Once the details have been explained, researchers should ask the child if he or she would like to participate in the study. However, the authors observe, investigators should be aware that some children are unwil ling to object to an authority figure’s request.

——— Forwarded message ———-
From: Baker, Kimberly <[email protected]>
Date: Wed, Feb 7, 2018 at 10:33 AM
Subject: The Community Action and Mattering Initiative
To:
Dear Parents,

This Spring, KHS is once again partnering with the University of New Hampshire and the Centers for Disease Control and Prevention, to participate in the research project, The Community Action and Mattering Initiative (CAMI). As part of this continued partnership with UNH to promote healthy relationships among students, all students in our school are invited to participate in a survey during I-Time on Friday, February 23rd, 2018.
Attached to this email is a permission slip and information sheet that provides information about the survey including the purpose and description of the survey. In order for your child to participate in the survey you must sign the permission slip and check the box that states you agree to his/her participation. If you do not wish your child to participate, UNH is requesting that you still complete the form and choose “I do not agree to have him/her participate in this research project.” If you do not return a permission slip we will assume that you do not want your child to participate in the survey. For returning the permission form (with either a yes or no response), you will be entered into a $100 VISA gift card raffle.

Hard copy permission slips are available in the School Counseling Office, Green House, Blue House, Communications, or the Main Office. You or your child can return the permission slip to the School Counseling Office or to his/her school counselor. Or you can sign and email the form to [email protected] or text the form to (603)-285-5747 to submit it directly.
Any questions about the study can be addressed to Dr. Vicki Banyard at the University of New Hampshire by phone (603-862-2869) or email ([email protected]). 

Thank you for your continued support of initiatives to promote health and wellness among students at Keene High School.

Thank you!
Kim


Kimberly Baker
Director of School Counseling
Keene High School
43 Arch St.
Keene, NH 03431
(603)352-0640 x3722

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2)
Thank you for your request for information. When I get to my office today I will send you a copy of the parent consent and a copy of the survey. However, in the meantime I am answering your questions below.

1.       I will provide a copy of the survey in a separate email.
2.       Our study is overseen and approved by our Institutional Review Board for the Protection of Human Subjects which follows all relevant ethical guidelines very closely. If you have questions about their work or how they provide oversight please contact Julie Simpson at [email protected] All protocols are carefully reviewed and monitored.
3.       See 2 above. The IRB reviews our protocols to make sure they follow all relevant ethical standards and guidelines
4.       Students will receive a fruit snack at the time of the survey if they wish. They will be entered into a drawing for a chance to win a gift card.
5.       Please see parental consent form that will be provided in a separate email with the survey.
6.       All consent is active, meaning that parents choose if they want their student to participate. Students without parental permission will not be given the survey. Even students with parental permission will be given an assent form so that students will also have the right to say yes or no to the survey.
7.       We do parental consent for each survey we do.
8.       Please see discussion of IRB above.
9.       Please see discussion of IRB above. We do not collect names of students on surveys and thus we cannot identify a students’ data. All reports from the surveys are reported as groups of responses. This is detailed in the parental consent document.
10.   We do not track students over time to match surveys.
Thank you for your interest in our work. I will send the other documents shortly.

Sincerely,
Victoria Banyard, Ph.D.
Professor, Department of Psychology
University of New Hampshire

Ms. Banfield,

Per your request, the UNH Institutional Review Board (IRB) for the Protection of Human Subjects in Research complies with federal human subjects protections regulations (45 CFR 46) and the ethical principles of The Belmont Report.

Julie

Julie F. Simpson, Ph.D.
Director, Research Integrity Services
Affiliate Assistant Professor of College Teaching & of Education
University of New Hampshire
Service Building, Room 107
51 College Road
Durham, NH 03824-3585
Phone: 603/862-2003 * Fax: 603/862-3564
Email: [email protected]

Follow me on Twitter: https://twitter.com/ResearchEthics2
Check out the UNH RCR Library Guide: http://libraryguides.unh.edu/RCR/intro
Visit the UNH Research Blog:  http://www.unh.edu/research/blog
3)

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From: Ann Marie Banfield [mailto:[email protected]] 
Sent: Thursday, February 8, 2018 2:38 PM
To: [email protected]; Banyard, Victoria <[email protected]>; [email protected]; [email protected]; Simpson, Julie <[email protected]>
Cc: Dr. Gary Thompson <[email protected]>; John Reagan <[email protected]>; Ward, Ruth <[email protected]>; [email protected]; [email protected]; [email protected]; David Solomon <[email protected]>; Rich Girard <[email protected]>; [email protected]; Edelblut, Frank <[email protected]>; [email protected]; Bill Duncan <[email protected]>; Kate Cassady <[email protected]>; [email protected]; [email protected]; [email protected]; [email protected]; Devon Chaffee <[email protected]>; [email protected]
Subject: Re: Right to Know Request

Thank you for your prompt reply.
I’m still looking for details and clarifications to your response.  That is highlighted in yellow below. (BOLDED)
Ann Marie Banfield

1.       I will provide a copy of the survey in a separate email.
2.       Our study is overseen and approved by our Institutional Review Board for the Protection of Human Subjects which follows all relevant ethical guidelines very closely. If you have questions about their work or how they provide oversight please contact Julie Simpson at [email protected] All protocols are carefully reviewed and monitored.
Where are these “relevant ethical guidelines and protocols” ?   I would have assumed that the Keene School district would have required this information before agreeing to distribute this survey to their students ?  I’m copying Ms. Simpson on this e-mail so that someone will provide a direct link, or documentation that I requested. 
3.       See 2 above. The IRB reviews our protocols to make sure they follow all relevant ethical standards and guidelines
Does that mean that UNH will NOT be following the APA’s ethical guidelines as I asked about? 
4.       Students will receive a fruit snack at the time of the survey if they wish. They will be entered into a drawing for a chance to win a gift card.
5.       Please see parental consent form that will be provided in a separate email with the survey.
6.       All consent is active, meaning that parents choose if they want their student to participate. Students without parental permission will not be given the survey. Even students with parental permission will be given an assent form so that students will also have the right to say yes or no to the survey.
Does this mean that you have not provided parents with “potential risks” as the APA suggests in their ethical guidelines? 
7.       We do parental consent for each survey we do.
Should I assume that the one time consent form (now required by NH law) is all you will request from parents ? Ongoing consent will not be required as the APA requires? 
8.       Please see discussion of IRB above.
Please provide any documentation on a privacy policy as it applies to this research project. Specifically one that identifies how and where the data is stored, for how long, who has access, etc. 
9.       Please see discussion of IRB above. We do not collect names of students on surveys and thus we cannot identify a students’ data. All reports from the surveys are reported as groups of responses. This is detailed in the parental consent document.
Should I assume that there is no privacy protections or any protocols if there is a breach? 
10.   We do not track students over time to match surveys.
4)
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On Thu, Feb 8, 2018 at 3:05 PM, Banyard, Victoria <[email protected]> wrote:
As a member of the American Psychological Association, I do follow their ethical guidelines closely in my work as does my Co-PI Dr. Katie Edwards. You are welcome to visit the website for the UNH Institutional Review Board which does describe their work. We received IRB review and approval before approaching Keene about the study.

I am attaching the parental consent document. As you can see it does describe potential risks. These are a required part of all parental consent and youth assent documents.

As I stated earlier, we are not tracking specific students over time. Each time we do a survey at the high school we ask for new parental consent forms to be signed. While some students may have taken a previous survey, for this study their parents are still given a new consent form each time we come to the school.

IRB approval is contingent on having a protocol which includes that data will be stored on secure websites or in locked cabinets in our university lab. So thus we have many protections in place to assure that there is not a data breach. A main privacy protection is that we do not have names of students associated with any specific survey. Consent forms are stored separately and not in any way linked to specific surveys. So there is no way for anyone to know a students’ specific answer. All of these aspects of the study have been discussed with Keene High School staff before the project began and we have ongoing conversations about this as well.

I have attached the consent form and the survey as well as an information sheet about survey questions. I feel that I have fully answered your questions and do not have anything more to add beyond this.

Sincerely,
Victoria Banyard, Ph.D.
5)

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On Sat, Feb 10, 2018 at 11:40 AM, Ann Marie Banfield <[email protected]> wrote:
Dr. Baynard,

In your reply, you said, “I do follow their ethical guidelines closely in my work.”  The APA Code of Ethics is very clear on parental consent when administering these kinds of surveys to minors.
9.03 Informed Consent in Assessments 
(a) Psychologists obtain informed consent for assessments, evaluations, or diagnostic services, as described in Standard 3.10.  
3.10 Informed Consent  
(b) For persons who are legally incapable of giving informed consent, psychologists nevertheless (1) provide an appropriate explanation, (2) seek the individual’s assent, (3) consider such persons’ preferences and best interests, and (4) obtain appropriate permission from a legally authorized person, if such substitute consent is permitted or required by law. When consent by a legally authorized person is not permitted or required by law, psychologists take reasonable steps to protect the individual’s rights and welfare.

Tom Cronin, Public Affairs Manager from UNH, has lobbied against informed parental consent when administering non-academic surveys to children.

Jon DiPietro, a digital marketing specialist in New Hampshire said this after looking over the survey and documentation UNH has provided:
Specifically, with regard to privacy, there is more than enough information here to narrow down a survey to a small group of students and in many cases, a single individual. Let’s take a look at the demographics of the school district (stats from the DoE website):

These are calculations based on district-wide demographics, so they are not necessarily accurate numbers for each grade. They’re just estimates of how many genders and ethnicities you’d expect to see statistically. And so, like the example I gave you in my previous email, how many native American, black, Hispanic, or Asian girls or boys are in each grade? Very, very few. When you layer on top of that some of the other answers in the survey (like how long they’ve lived in the area), it’s quite easy to personally identify any individual, non-white student in this survey. Therefore, it’s not anonymous. Period.

And as I’ve detailed in my previous testimony, no data is safe or secure.” 

There has been plenty of testimony provided in hearings on data-security that has dispelled the myth that these kinds of surveys are anonymous.  Consulting with tech experts at UNH in the future may help clear up this confusion.

This is a systematic problem among University researchers in New Hampshire, and local schools throughout the state.  In the future, I will be looking for better documentation and assurances that acknowledge the student data has extensive precautions and privacy protections that parents can see in the documentation provided to each school district.

A middle School in Massachusetts administered a CDC survey that included questions that were controversial and personal.
https://www.rutherford.org/publications_resources/tri_in_the_news/school_surveys_7th_graders_on_oral_sex
A middle school in Massachusetts is under fire for requiring children to complete a graphic sex survey — without parental knowledge or consent — that included questions about sexual partners and oral sex.
“Kids were actually told to sit down and take them,” said John Whitehead, president of The Rutherford Institute. “The parents here are very upset.”
Whitehead said the girls were deeply disturbed by the subject matter of the study – including questions about suicide, drug use and sexual behavior.
One of the questions is, ‘have you ever had oral sex,'” Whitehead said. “You’re talking about kids who probably don’t even know what oral sex is.”
Principal Fran Thomas told Fox News Radio that students were indeed given the survey – and admits it was graphic. But Thomas said the school has nothing to do with the content and they were required to administer the survey to fulfill a grant requirement.
“I can take no responsibility for what’s on that survey,” Thomas said. “It’s not generated by the school system.”
Thomas said the survey was funded by a federal grant and administered by LUK Inc., a local social services agency — in coordination with the Centers for Disease Control.
A spokesperson for the CDC denied any involvement in the Fitchburg sex survey. The CDC said only seven states and six urban districts include sexual identity questions on their YRBS surveys – and the questions are optional.
But Principal Thomas disputed that notion.
“It was not optional,” he said. “It’s part of a grant that they applied for and the district said you have to administer this survey.”

Some of the questions on the CDC survey you are distributing are inappropriate, leading, and may be more suited to the adults in the community. On page 3, why are you asking 13-year-old kids with minimal or no real world experience to provide their wisdom about what the people of Keene think and feel? How do they know?

Section Six: “The next set of questions ask about what people in Keene actually think or do.” Again, we’re asking kids with very little life experience to explain what other people are thinking.

It is critical that the grant dollars do not become the main focus when administering these surveys.  Unfortunately, many of us heard the opposite message during public hearings with the UNH lobbyists and bureaucrats from HHS. Their testimony focused on the importance of securing funding versus protecting children.  This contradicts both the APA’s code of ethics and the IRB.

Informed consent and privacy protections must be the focus.  The IRB affirms the importance of protecting the subjects that are involved in the research, especially when they do not have the capacity to protect themselves.  Since students are still considered minors, if the IRB is the ethical guideline along with the APA’s Code of Ethics, it seems appropriate for UNH to make a clear statement in support of informed parental consent when children become the target of research.

Past and current actions by UNH have shown just the opposite: a disregard for informed parental consent. This will continue to prompt parental rights organizations to sift through the materials, policies and protocols when UNH administers surveys to children in New Hampshire Schools.

Sincerely,

Ann Marie Banfield
Education Liaison, Cornerstone Action

6)
=======================FINAL====================
Commissioner Edelblut and honorable members of the House, Senate Education Committee and State Board of Education:

First let me apologize for not adding the House Education Members back to the e-mail I sent to Dr. Baynard.  Please scroll down to see the e-mail below.

I want to thank you for your time reviewing the e-mails that were exchanged.  I wanted to make sure all of this information was transparent. I also want to thank those of you who’ve supported parental rights in the past by requiring informed and written consent by parents before non-academic surveys could be distributed in New Hampshire Schools.

We’ve heard testimony over the past few years from university lobbyists and bureaucrats who’ve argued against this important requirement.  Their arguments focused on grant funding instead of informed parents and guardians.  As you can see from this e-mail exchange, those who govern the ethical boundaries in the field of psychology stand firm and support informed parental consent.

We’ve seen Plymouth State and some New Hampshire schools transferring sensitive student data for their research that were void of privacy protections and informed parental consent.  This flagrant disregard for informing parents and guardians violates the ethical norms that should be guiding their decisions.

I hope that in the future, you will stand firm knowing that professionals are failing to offer the kind of protection children deserve when they walk into a school building.

This has been a problem in the past for UNH.  According to this article, Parents shocked by graphic dating survey  [referring to a UNH survey] ,
the first section asked identifying questions, including the first letter of each student’s first and middle name, birth month and year and the name of the student’s first pet. Students were also asked their gender, age, grade, ethnicity, and whether they received a free or reduced price meal. …

High school Principal Philip Conrad said the survey was done by a professor at UNH to research “healthy dating relationships for teens. “…

Bob Pokress, a school committee candidate said,  “… It was not asking just for opinions, it was asking specifically for certain types of behaviors that could be used against the student should the information ever get into the wrong hands.”

One section of questions in particular, Pokress said, “absolutely puts students Fifth Amendment rights at risk.” Pokress said he consulted with a local lawyer who confirmed his concern that the surveys have the potential to be subpoenaed “if legal actions ever took place against the student, and these answers could be used against them.”

WMUR reported that a “UNH spokesperson said the university stands behind the survey but admits it caused some confusion.  It was administered inconsistent with previous surveys.  In the future, the surveys will only be presented in a controlled environment, said Erica Mantz, UNH Media Relations.

Nothing in that statement supports informed consent from parents as required in the APA’s Code of Ethics or IRB, and it’s easy to see how students’ sensitive information was at risk. After this incident, UNH lobbied against informed parental consent.

Since the prior survey asked identifying questions from the children who took the survey, it’s a matter of concern that those students’ data was not a priority for UNH or the school district administrators.  I would have hoped that UNH had an explicit policy that spells out how that data will be controlled, who owns it, if it will be destroyed and a protocol if the data is ever breached.

The IRB does say:

1. Respect for Persons. — Respect for persons incorporates at least two ethical convictions: first, that individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection. 

In most cases of research involving human subjects, respect for persons demands that subjects enter into the research voluntarily and with adequate information.  

One special instance of injustice results from the involvement of vulnerable subjects. Certain groups, such as racial minorities, the economically disadvantaged, the very sick, and the institutionalized may continually be sought as research subjects, owing to their ready availability in settings where research is conducted. Given their dependent status and their frequently compromised capacity for free consent, they should be protected against the danger of being involved in research solely for administrative convenience, or because they are easy to manipulate as a result of their illness or socioeconomic condition.

I think we can all agree that children would fall into this category.   As such, IRB is clear in their support for protecting New Hampshire students.  Again, this seems to contradict the public position UNH has taken when opposing parental consent on non-academic surveys.

Dr. Baynard said, “IRB approval is contingent on having a protocol which includes that data will be stored on secure websites or in locked cabinets in our university lab. So thus we have many protections in place to assure that there is not a data breach. A main privacy protection is that we do not have names of students associated with any specific survey. Consent forms are stored separately and not in any way linked to specific surveys. So there is no way for anyone to know a students’ specific answer. All of these aspects of the study have been discussed with Keene High School staff before the project began and we have ongoing conversations about this as well.”

I would expect this to be something put in a Memorandum of Understanding between UNH and the Keene School District.  This is why I asked for documentation.  We can also see from an expert in data security, the problems with the data security.

I will be sharing this information with the New Hampshire board of psychology the state board of licensure and certification and I will send a copy to the Senate and House ED&A Committees.  It’s important that you are all informed about the failures and contradictions between the ethical standards and those who are administering surveys and assessments in our local schools.

Sincerely

Ann Marie Banfield
Education Liaison, Cornerstone Action

Ann Marie Banfield currently volunteers as the Education Liaison for Cornerstone Action in New Hampshire. She has been researching education reform for over a decade and actively supports parental rights, literacy and academic excellence in k-12 schools. You can contact her at: [email protected]