When there is any kind of research done on children, ethical guidelines require the researchers to obtain informed consent from the parent or guardian.
In NH, researchers have obtained informed consent from parents when school administrators gather sensitive data on children in public schools.
Informed Consent
Obtaining consent from parents/carers and children is central to the research relationship and signals respect for the research participant’s dignity, their capability to express their views and their right to have these heard in matters that affect them. Informed consent is an explicit agreement which requires participants to be informed about, and have an understanding of, the research. This must be given voluntarily and be renegotiable, so that children may withdraw at any stage of the research process.
Several years ago parental rights advocates lobbied to change New Hampshire law so that when vendors collected highly sensitive data on children via a non-academic survey, they needed informed consent from parents. This is what Federal Law requires in the PPRA Protection of Pupil Rights Amendment.
At that time, the Department of Health and Human Services lobbied to EXEMPT the CDC’s Youth Risk Behavior Survey (YRBS) from that ethical requirement. That meant that the YRBS was OUT OF COMPLIANCE with basic ethical guidelines when conducting research on YOUR children.
This year Rep. Ralph Boehm filed legislation to remove the YRBS as being exempt from parental consent. (HB1639)
HB1639 passed the New Hampshire House and then was sent to the Senate Education Committee where they amended HB1639 to remove the important provision that would require informed consent from parents. In other words, they completely gutted this important legislation that protects the privacy RIGHTS of your children.
CDC MAY WIN IN NH: BUT YOUR CHILDREN WILL LOSE
In addition to removing this important provision, they are also removing the reference to the CDC!! This is outrageous. Why don’t they want you to know that the YRBS is a CDC survey? They want to SCRUB this information from the law. Read their proposed amendment here. They strike out “Centers for Disease Control and Prevention” from the current law. Why don’t they want you to know that the YRBS is developed by the CDC?
The Senate Ed Committee listened to testimony but then changed the proposed legislation back to the original language that exempts the YRBS from requiring informed consent from parents. They also propose removing any reference to the CDC in the law. What they have done is make the law worse for parents instead of better. The CDC must be thrilled with this amendment, but parental rights advocates are NOT.
If the New Hampshire senate votes for this amendment, it will mean that the CDC – YRBS survey is still NOT IN COMPLIANCE with basic ethical guidelines when it is given to YOUR CHILDREN in public schools.
You can read testimony sent to legislators by Dr. Mark B. Constaintain. He spells out how to conduct this kind of research on children here.
Those who object to informed consent by parents want to keep parents in the dark when these surveys are given to children. They explained at the hearing that if enough parents refuse this survey for their children, they might not receive grant funding. That means that they are prioritizing $$$ MONEY over your child’s privacy rights.
Your child cannot take a Tylenol or attend a field trip without consent from their parents or guardians. But if they ask children to hand over all kinds of sensitive and personal information on themselves and their families, they don’t want parents to consent.
Contact your senators and let them know that they are continuing to allow schools to EXPLOIT your child in school. http://www.gencourt.state.nh.us/bill_status/billinfo.aspx?id=1538&inflect=2
FIND YOUR SENATOR HERE: http://www.gencourt.state.nh.us/senate/members/wml.aspx
They need to reject the Senate Amendment on HB1639 and Pass the House version that requires informed consent before your child takes a non-academic YRBS survey FROM THE CDC.
Did you know that there are questions about illegal drug activity on this survey ? Which means your child gives up their 5th amendment rights because they aren’t even away that they have 5th amendment rights?
Did you know that kids have learned how to use drugs by taking these surveys? Parents have reported that their kids learned to sniff glue to get high by taking these surveys?
Parents also reported that in Hollis, they never received notification that their children took this survey?
Did you know that there are tracking questions on the survey?|
Did you know that they can ask your child about guns in the home, their gender identity, drug usage, sexual behavior? And you may never know.
THIS CDC Survey does not require informed consent from parents. That’s WRONG.
Tell the New Hampshire Senators that your child should NOT be exploited !
