Journal of Genetic Counseling

, Volume 21, Issue 3, pp 386–391

A Family Experience of Personal Genomics

Case Study

Abstract

This article presents a personal journey of a close-knit family from Málaga, Spain who engaged with direct-to-consumer (DTC) genomic testing. Whilst the testing was initiated by one member of the family who works as a genome bioinformatician, none of the remaining family had any prior experience with DTC genetic testing. A thoughtful account, written in the first person, is offered on the experience of genome testing across the various members of the family together with a reflection on how it felt to be a custodian of the ‘family genome’. The way the family processed their genome information is explored and the difficulties and challenges that resulted are discussed. Whilst there is a wealth of literature that describes how families communicate information surrounding single genes, there is very little which explores the experience of communication about whole, shared genomes. The experiences described in this paper provide an insight into this new territory.

Keywords

Direct-to-consumer genetic testing Family communication Genotype Whole family genotyping Custodian of genetic information Consent Genetic risk 

References

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Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  1. 1.CambridgeUnited Kingdom

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