Genetic Registers

Abstract

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

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How to Cite close
Kerzin‐Storrar, Lauren(Sep 2006) Genetic Registers. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005619]