Return of Individual Research Results Incidental Findings: Facing the Challenges of Translational Science

摘要

The debate over return of individual research results and incidental findings to research participants is a key frontier in research ethics and practice. Fundamentally, this is a problem of translational science, a question of when information about an individual that is generated in research should be communicated for clinical attention, as the technology itself is moving into clinical care. There is growing consensus that investigators should offer participants at least those individual findings of high clinical importance and actionability. Increasing attention to what information biobanks and secondary researchers owe people who provide data and samples offers an opportunity to treat these source individuals as research partners. Cutting-edge issues include return of results in pediatric populations and return to kin and family, including after death of the proband. Progress will require facing the continuum linking research and clinical care and developing standards and models for return.