The ELSI Advisory Group has developed guidance for 'Reporting Actionable Genetic Findings to Research Participants’. The document contains recommendations that suggest mechanisms to support an ethically responsible handling of research findings that have potential medical relevance for individual research participants involved in SPHN-funded studies.
They suggest harmonized procedures to enhance the public accountability of decisions regarding how to report individual research findings to research participants. Adherence to the recommendations contained in this document will promote more accountable decisions in such an extremely delicate subject matter and will increase public trust in SPHN as well as in SPHN grantees.
The full report can be downloaded here.