Informed Consent and Adolescents with Cancer: Challenges and Tools in Online Studies
Research Article
Maria Carolina Neves, Sara Monteiro, Judith B. Prins, Célia
Journal of Adolescent and Young Adult Oncology, 3 July 2024
Introduction
Adolescents and young adults (AYAs) with cancer are defined as those diagnosed between 15 and 39 years. Estimates suggest 1,335,100 new AYAs were diagnosed in 2019, but this population is still underrepresented in research. Some challenges to investigating this population are the differences in cancer types between younger and older AYAs; they are difficult to track and easily lost at follow-up; and they are difficult to find at the hospital since they are divided between the pediatric and adult clinics. This article will focus on adolescents 15–17 years old since these are the ones who might need parental consent to participate in research.
Online research has increased in popularity in the last decades, and in 2017, it was the primary way of collecting quantitative data worldwide. Recruiting minors through online methods was shown to be more efficient and cost-effective than offline methods while still allowing researchers to have representative sample. Research shows that adolescents use the internet frequently, making it a good place when investigating adolescents. Regarding cancer research, some studies have used online methods to recruit adolescents. However, there are additional challenges when using online methods with adolescents compared with offline methods. One of them is obtaining parental consent.
This article describes the challenges and alternatives to obtaining informed consent in online quantitative studies of adolescents with cancer and good practices. This may provide tools for researchers to define how they will obtain informed consent in online studies of adolescents with cancer and help lower barriers in research, encouraging more quantitative studies with this population.
Center for Informed Consent Integrity 