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Genetic Registers

  1. Lauren Kerzin-Storrar

Published Online: 15 SEP 2006

DOI: 10.1002/9780470015902.a0005619

eLS

eLS

How to Cite

Kerzin-Storrar, L. 2006. Genetic Registers. eLS. .

Author Information

  1. Central Manchester Hospitals Healthcare Trust and University of Manchester, Manchester, UK

Publication History

  1. Published Online: 15 SEP 2006

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