Australian professionals’ understandings and experiences of broad consent for the future research use of paediatric genomic data

Broad consent is used to facilitate paediatric genomic research by enabling children’s genomic data to be stored, shared, re-analysed and used in future studies. However, it also raises ethical concerns about whether such consent can be considered to be appropriate and informed, and whether it provides sufficient protection for autonomy. This study examined how Australian clinical, research and data-governance professionals understood and operationalised broad consent for future research use of paediatric genomic data. This qualitative study draws on semi-structured interviews with 20 Australian professionals involved in seeking, explaining, operationalising or governing consent for the research use of paediatric genomic data between February and August 2025. Interviews were analysed thematically. Participants generally described broad consent as workable only when accompanied by clear explanation, proportionate disclosure, voluntary choice, governance oversight and options concerning future contact. Their accounts also identified conditions that could undermine meaningful engagement: diagnostic urgency, emotional pressure, compressed consultations and reliance on professional or institutional trust. Participants varied in how they interpreted the boundaries of broad-consent clauses and when recontact, reaffirmation or re-consent was required. They described the progressive involvement of children and young people as desirable, but not consistently implemented in practice. This study captures professionals’ accounts of how broad consent is understood and operationalised in the future research use of paediatric genomic data. Participants commonly did not regard broad consent as sufficient in itself; they described its appropriate operation as depending on continuing communication, meaningful choices, opportunities to revisit earlier decisions, the progressive involvement of children and young people, and ongoing ethical and institutional oversight. Many of these safeguards were inconsistently understood, unevenly implemented or remained aspirational.