Navratil, Judith L.
(2015)
One Size Doesn’t Fit All: Showing Adolescents the Respect They Deserve as Research Participants.
Master's Thesis, University of Pittsburgh.
(Unpublished)
Abstract
In this paper I argue that adolescents should be asked directly for informed consent to participate in minimal risk research about behaviors that impact adolescent health and well-being. I demonstrate that parental permission for an adolescent’s participation in such research does not provide additional protection from research risk and is disrespectful of the adolescent’s capacity to choose based on his own assessment of the risks, discomforts or inconveniences of participation. Requiring parental permission while merely asking an adolescent to “assent” also undermines the moral benefit he might attain because it denies him the opportunity to voluntarily make a contribution of his time and effort for the benefit of others. I show that the federal regulations governing research with children are based on an inappropriate “one size fits all” perspective that treats all kinds of research and all children under the age of 18 similarly in regard to the requirement for parental permission. The regulations should be amended to recognize adolescents as a distinct population, “characterized by developing cognitive capacities in addition to judgment.” While adolescents may need additional protections as research participants, IRBs need to ask whether parental permission is an appropriate protection, or whether there should be other protections that are tailored to the actual vulnerabilities of adolescents. Finally, I discuss the possibility that adolescents may benefit from being asked to share their stories with research investigators. Marginalized youth, including those who have mental health problems, drug addiction or other stigmatizing conditions, may gain a sense of self-respect from being asked to contribute their personal experiences to help other youth in the future. Allowing youth to participate in observational research projects that are carefully constructed to provide appropriate protections may also provide adolescents with an opportunity to obtain guidance and support from adult professionals who are sympathetic, nonjudgmental, and experienced with adolescents’ problems and behaviors.
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Details
| Item Type: |
University of Pittsburgh ETD
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| Status: |
Unpublished |
| Creators/Authors: |
| Creators | Email | Pitt Username | ORCID  |
|---|
| Navratil, Judith L. | jln33@pitt.edu | JLN33 | |
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| ETD Committee: |
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| Date: |
9 September 2015 |
| Date Type: |
Publication |
| Defense Date: |
5 August 2015 |
| Approval Date: |
9 September 2015 |
| Submission Date: |
10 August 2015 |
| Access Restriction: |
No restriction; Release the ETD for access worldwide immediately. |
| Number of Pages: |
65 |
| Institution: |
University of Pittsburgh |
| Schools and Programs: |
Dietrich School of Arts and Sciences > Bioethics |
| Degree: |
MA - Master of Arts |
| Thesis Type: |
Master's Thesis |
| Refereed: |
Yes |
| Uncontrolled Keywords: |
Adolescent Research, Research Ethics, Informed Consent |
| Date Deposited: |
09 Sep 2015 13:00 |
| Last Modified: |
15 Nov 2016 14:29 |
| URI: |
http://d-scholarship.pitt.edu/id/eprint/25939 |
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