Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives

Area of Science:

• Pediatric intensive care
• Biobanking ethics
• Clinical research ethics

Background:

• Biorepository research involving children presents unique ethical challenges, particularly in the pediatric intensive care unit (PICU).
• Understanding patient and parent perspectives is vital for ethical research conduct.

Purpose of the Study:

• To explore adolescent/young adult (A/YA) patients' and parents' views on biorepository research in the PICU.
• To identify comprehension levels and desired involvement in research decisions among A/YA patients.

Main Methods:

• Cross-sectional, interview-based study.
• Surveyed 20 adolescent/young adult (A/YA) patients and 75 parents of PICU patients.
• Assessed attitudes, comprehension of research elements, and preferences for decision-making.

Main Results:

• A/YAs generally held positive attitudes towards biobanking.
• A/YAs demonstrated higher comprehension regarding the ability to withdraw from research, but lower comprehension of purpose, procedures, risks, and benefits.
• Nearly all A/YAs desired a role in decisions regarding their sample usage.
• Parental views on involving children in decision-making were divided, with 55% favoring child involvement.

Conclusions:

• Enhancing comprehension of research purpose, procedures, risks, and benefits is essential for A/YA participants in biorepository studies.
• Actively involving A/YAs in decisions about their biospecimen use is critical for ethical pediatric research.
• Future efforts should focus on improving A/YA understanding and empowering their participation in research decisions.