Communicating genetic information in families - a review of guidelines and position papers
AuthorForrest, Laura E.; Delatycki, Martin B.; SKENE, LOANE; Aitken, MaryAnne
Source TitleEuropean Journal of Human Genetics
PublisherNature Publishing Group
University of Melbourne Author/sFORREST, LAURA ELENOR; Delatycki, Martin; SKENE, LOANE; Aitken, Mary
AffiliationSchool of Medicine: Paediatrics
Document TypeJournal (Paginated)
CitationsForrest, L. E., Delatycki, M. B., Skene, L., & Aitken, M. (2007). Communicating genetic information in families - a review of guidelines and position papers. European Journal of Human Genetics, 15(6), 612-618.
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© 2007 Nature Publishing Group. Publisher PDF version is restricted access in accordance with the NPG policy.
This article aims to review ethical and clinical guidelines and policies addressing the communication of genetic information in families. Websites of national and regional bioethics committees, national human genetics societies, international health organisations, genetic interest groups and legal recommendations committees were searched for guidelines and policies. The databases Medline, Web of Science and Google Scholar were also utilised to search for additional guidelines relating to the communication of genetic information in families. The guidelines and policies included in this review are limited to those available in English. The search resulted in guidelines from 18 international, regional and national organisations from six countries pertaining to family communication of genetic information. The following ideals were common in their guidelines: (1) individuals have a moral obligation to communicate genetic information to their family members; (2) genetic health professionals should encourage individuals to communicate this information to their family members; and (3) genetic health professionals should support individuals throughout the communication process. The difference between the organisations’ guidelines was the inclusion of information about the role of the health professional in supporting clients during the process of communicating genetic information to their family members.
Keywordscommunication; families; genetic information; guidelines
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