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Family Communication of Genomic Information

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Handbook of Genomics and the Family

Part of the book series: Issues in Clinical Child Psychology ((ICCP))

Abstract

Genetic information is inherently both personal and familial. While knowledge of personal genetic risk often generates information relevant to other family members (information flow from consultand to relatives), in many situations the first suspicion of genetic risk is itself prompted by shared information within a family, that is, the family history (information flow from relatives to consultand). Thus, except in contexts where genetic testing is offered to all members of a general target population (e.g., newborn screening), the discovery or clarification of genetic risk generally depends on the sharing of information between family members. In clinical genetics as practiced in Western culture, therefore, there is a paradoxical situation in which family information is often pivotal in risk assessment procedures, but an individual consultand, whose genetic status may have been clarified through the sharing of “family information,” may also have the right to prevent disclosure of what is now “personal information” to other family members.

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  1. University of Ottawa, Ottawa, ON, Canada

    Brenda J. Wilson

  2. Memorial University, St. John’s, NL, Canada

    Holly Etchegary

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  1. Division of Health Outcomes & Health Beh, Department of Oncology, Georgetown University, Whitehaven St, NW 3300, Washington, 20007, District of Columbia, USA

    Kenneth P. Tercyak

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Wilson, B.J., Etchegary, H. (2010). Family Communication of Genomic Information. In: Tercyak, K. (eds) Handbook of Genomics and the Family. Issues in Clinical Child Psychology. Springer, Boston, MA. https://doi.org/10.1007/978-1-4419-5800-6_7

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