Genetic Registers

The term ‘genetic registers’ has been used to describe a range of entities, including databases of research cases and samples, sources of epidemiological data and clinical record systems; however, the current usage refers to a genetic service that proactively offers genetic counseling and long-term follow-up to extended families affected by specified genetic conditions, over generations. While having a primary aim of promoting ongoing access to genetic counseling services to all family members at risk, the nature of a proactive, family-based service necessitates careful attention to potentially controversial issues.

Keywords: genetic counseling services; confidentiality; proactive counseling; register