How do you handle potential conflicts between research goals and participant autonomy in studies involving minors or individuals with limited decision-making capacity?

Sample interview questions: How do you handle potential conflicts between research goals and participant autonomy in studies involving minors or individuals with limited decision-making capacity?

Sample answer:

  1. Informed Consent Modification:

  2. Seek parental consent while also attempting to obtain assent from the minor, or involvement from the legal guardian for those with limited decision-making capacity.

  3. Provide age-appropriate information and tailor the content to promote understanding.
  4. If the minor or individual expresses concerns or refuses, honor their decision and consider alternative study methods.

  5. Protection of Privacy and Confidentiality:

  6. Ensure that the minor’s privacy is maintained throughout the study and that any data collected is treated confidentially.

  7. Obtain necessary permissions from parents or legal guardians regarding the use of sensitive information.
  8. Clarify data retention and destruction policies to participants and their legal representatives.

  9. Minimization of Risk and Harm:

  10. Conduct a thorough risk-benefit assessment and take steps to minimize potential harm to participants.

  11. Establish safety protocols and obtain parental or guardian approval for any procedures that pose even minimal risk.
  12. Provide a safe and supportive environment that respects the participant’s rights and well-being.

  13. Active Monitoring and Ongoing Support:

  14. Establish a system for monitoring the participant’s well-being and progress throughout the study.

  15. Provide resources and support to participants who experience distress or difficulties related to the research.
  16. Be prepared to modify the study or withdraw participants if their well-being is jeopardized.

  17. Ethical Considerations and Institutional Review:

  18. Ensure that the study has been approved by an Institutional Review Board (IRB) or an equivalent ethics committee.

  19. Follow ethical guidelines and principles, such as the Belmont Report and the Declaration of Helsinki.
  20. Consider the potential lo… Read full answer

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