The development of high-throughput gene sequencing technologies poses new challenges associated with the management of the vast amounts of genetic data they generate. These technologies provide extensive genetic information about a patient’s current health status and future risks, which can also have implications for their family members and future offspring. As more genes are analysed, the likelihood of discovering clinically relevant findings increases.

This project examines the ethical and regulatory challenges involved in managing secondary and incidental findings that may be clinically relevant but are unrelated to the primary purpose of genetic testing.

The primary objective of the project is to develop clear, accessible ethical and legal guidelines for clinical and research staff engaged in complex genomic analysis. This includes recommendations for developing institutional policies on how to manage secondary and incidental findings and updating informed consent procedures for genetic analysis.