Park City High School Collecting DNA
The letter below was sent in by a parent in Park City. The High School has apparently agreed to participate in a study where students will give DNA samples to a lab as an outbreak drill to test new lab equipment. The purpose is that in the future, they may want to determine how new H1N1 type diseases are spreading.
The letter says this is going to be an anonymous collection, but I believe this is inappropriate for a school to do without written consent from parents. In the letter below, it ends:
“If you do not contact us in one of the ways listed above, you are giving your consent to participate.”
So if an outbreak, or scare of one, happens in the future, will a lab be able to use that as an excuse to sweep in and take DNA samples of students, perhaps storing individually identifying data on them, without getting parental consent because it’s a crisis? Don’t think that can’t happen. People give up personal information all the time when there is a crisis without even thinking twice about it.
State Code specifies certain things about schools administering surveys to students and requiring opt-in forms and other stipulations.
http://le.utah.gov/~code/TITLE53A/htm/53A13_030200.htm
http://le.utah.gov/~code/TITLE53A/htm/53A13_030100.htm
53A-13-302. Activities prohibited without prior written consent — Validity of consent — Qualifications — Training on implementation.
(1) Policies adopted by a school district under Section 53A-13-301 shall include prohibitions on the administration to a student of any psychological or psychiatric examination, test, or treatment, or any survey, analysis, or evaluation without the prior written consent of the student’s parent or legal guardian, in which the purpose or evident intended effect is to cause the student to reveal information, whether the information is personally identifiable or not, concerning the student’s or any family member’s:
Not listed in the block below this paragraph is DNA and yet it states written consent is required in collecting data in tests whether the information is personally identifiable or not. Perhaps legislators need to revisit this section of code, but it seems like the proper thing for Park City schools to do in any type of study they want students to participate in would be to get opt-in forms signed by parents, and not make them opt-out.
Parents in the school district there should ask the district for their FERPA (Family Educational Rights and Privacy Act) policy and clarification on the protections afforded student information.
“students will help develop the protocol for collecting mucous samples that can then be used on a larger scale” That’s a pretty open ended and creepy statement. What larger scale? And for what purposes? Why is it important that school age children be “nudged” toward allowing this intrusion of their most personal private information (their DNA data under the guise of medical research). Normalization 101. Park City, along with Moab was one of the first ICLEI cities in Utah, are there any other areas/school districts doing this?
by the way, the kids names were put on the samples, even though the letter told us they would not be identified. Now 5 months later they are putting sensor devices ie: bio bracelets on our kids as part of another study…..whats next urin & blood samples> They bribed the kids into doing the DNA sampling by entering them in a drawing to win an IPad, this time they offered them $15.00 ITunes cards.
http://www.parkrecord.com/letters-to-the-editor/ci_22525248/park_city-contact_us
Letters to the Editor, Feb. 6-8, 2013
Postpone study until parents give consent
Posted: 02/05/2013 04:59:45 PM MST
Editor:
If your children attended Park City High School (PCHS) on October 9, 2012, they were subject to a DNA test. Opt-out forms were sent home with the high school students to the parents prior to the test. However, the children were offered a raffle ticket to win an iPad if they participated and the majority of the opt-out forms did not make it into parental hands. Most parents found out that their child’s DNA had been sampled after the fact, if at all. The information that went home stated that “the samples will be anonymous,” but the students were asked to put their names on the samples.
According to Utah Code :
53A-13-302. Activities prohibited without prior written consent – Validity of consent – Qualifications – Training on implementation.
(1) Policies adopted by a school district under Section 53A-13-301 shall include prohibitions on the administration to a student of any psychological or psychiatric examination, test, or treatment, or any survey, analysis, or evaluation without the prior written consent of the student’s parent or legal guardian.
PCHS students will be the subject of another study where the students will be asked to wear “proximity sensors” for a Contact among Utah’s School-age Population (CUSP) study beginning February 5, 2013. Again, opt-out forms were sent home. iTunes gift cards are being offered to students who will partake in the study.
The CUSP study should be postponed by PCHS until the Utah code can be followed, allowing time for proper opt-in documentation to be collected from the parents wishing to do so. At minimum, one can question the use of precious class time for such activities.
Barbara Kelley-DeLuca Park City
Welcome to the 21st century. Science and Epidemiology have come a long way. Collecting a sample or a CUSP study to do a science experiment does not necessarily have to tie into a broader conspiracy of student tracking. We can chase our own tail with the “proper” documentation or we could place a little bit of trust in the educators and let the kids learn a little bit of valuable science in the little bit of time set aside for a little bit of science.
All our smart phones are potential tracking devices. The phone companies say they will not track us. But do we believe them ? Has that stopped us from using our phones ? Let’s not make our kids a proxy fight to feed our ideological paranoia about the “Feds are tracking us”.
Thats scary