RECOMMENDED ACTIONS

As you review this list, please think about the following questions and come prepared to discuss these important values and reflections during the next session on:

1. Does the action support any of the values we identified as important? If so, which ones?  

2. What are the benefits of the action/suggestion? 

3. What are the drawbacks of the action/suggestion? 

 

• Community Supports:

  • Researchers should host a town hall before a study begins. The purpose would be to provide information about the study, answer questions, address concerns, and get feedback from the community. 

  • Researchers should have a community advisory board that provides advice about engaging minors in research, and researchers would report back to the board throughout the study. The board members would be paid for their time. 

• Adolescent Supports:

  • Provide counseling to adolescents during and after their participation in the study. Counselors would check in about how the adolescent is feeling, generally, and in relation to the study.  

  • Provide workshops to adolescents who are interested in participating in a study. The workshops would provide study-specific information, but also more broad skills and education for adolescent empowerment. 

• Allow alternatives to parental permission:

  • Option 1: Adolescent could select a trusted adult who helps them navigate consent process and makes sure they understand the study information and risks/benefits. Adolescents would decide whether to participate.  

  • Option 2: Adolescent could select at trusted adult (instead of a parent) to be part of the consent process, and that trusted adult would decide whether to grant permission to participate. 

  • Option 3: A neutral adult, or “ombudsperson,” would be appointed for all minors who want to enroll in the study but do not want to ask for parental permission. The ombudsperson could be identified by the community or by researchers but would not be part of the research team. The ombudsperson would decide whether to grant permission to participate.  

• Require parental permission for minors to participate.