Project deliverable Open Access
In the rapidly evolving world of genomic medicine, understandings of the significance of genomic information change with advances in research. For example, gene mutations may be reclassified from benign to harmful with important implications for risk management for cancer and heritable diseases. This can have significance for the treatment of individual patients, but the process of ‘recontacting’ them about their treatment is not systematically managed in the NHS or internationally at present. Moreover, recontacting gives rise to important ethical and legal issues associated with the management of genomic information about patients and families.
This Policy Brief recommends that it is essential that the NHS develop policy for recontacting in clinical genetics. Such policy may be a standalone policy focused on recontacting, or it may be part of a policy addressing a broader set of ethical, legal and social questions.
Putting it into Practice, Recontacting and Personal Information Management in Genomic Medicine in the NHA, Policy Brief - 2019.pdf