Data sharing in the age of predictive psychiatry: An adolescent perspective

Abstract

ABSTRACTBackgroundAdvances in genetics and digital phenotyping in psychiatry have given rise to testing services targeting young people, which claim to predict psychiatric outcomes before difficulties emerge. These services raise several ethical challenges surrounding data sharing and information privacy.ObjectivesThis study aimed to investigate young people’s interest in predictive testing for mental health challenges, and their attitudes towards sharing biological, psychosocial and digital data for such purpose.MethodsEighty UK adolescents aged 16-18 participated in the study. Participants took part in a digital role-play where they played the role of clients of a fictional predictive psychiatry company and chose what sources of personal data they wished to provide for a risk assessment. After the role-play, participants reflected upon their choices during a peer-led interview.FindingsParticipants saw multiple benefits in predictive testing services, but were highly selective with regards to type the data they were willing to share. Largely due to privacy concerns, digital data sources such as social media or Google search history were less likely to be shared than psychosocial and biological data, including school grades and one’s DNA. Participants were particularly reluctant to share digital data with schools (but less so with health systems).ConclusionsEmerging predictive psychiatric services are valued by young people; however, these services must consider privacy vs. utility trade-offs from the perspective of different stakeholders, including adolescents.Clinical implicationsRespecting adolescents’ need for transparency, privacy and choice in the age of digital phenotyping is critical to the responsible implementation of predictive psychiatric services.