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Communication about DTC Testing: Commentary on a ‘Family Experience of Personal Genomics’

  • Commentary
  • Published:
Journal of Genetic Counseling

Abstract

This paper provides a commentary on ‘Family Experience of Personal Genomics’ (Corpas 2012). An overview is offered on the communication literature available to help support individuals and families to communicate about genetic information. Despite there being a wealth of evidence, built on years of genetic counseling practice, this does not appear to have been translated clearly to the Direct to Consumer (DTC) testing market. In many countries it is possible to order a DTC genetic test without the involvement of any health professional; there has been heated debate about whether this is appropriate or not. Much of the focus surrounding this has been on whether it is necessary to have a health professional available to offer their clinical knowledge and help with interpreting the DTC genetic test data. What has been missed from this debate is the importance of enabling customers of DTC testing services access to the abundance of information about how to communicate their genetic risks to others, including immediate family. Family communication about health and indeed genetics can be fraught with difficulty. Genetic health professionals, specifically genetic counselors, have particular expertise in family communication about genetics. Such information could be incredibly useful to kinships as they grapple with knowing how to communicate their genomic information with relatives.

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Acknowledgements

Dr Anna Middleton is a British registered genetic counselor currently working as an Ethics Research for the Deciphering Developmental Disorders (DDD) study at the Wellcome Trust Sanger Institute, Cambridge, UK. The DDD study is a whole genome study which explores the genomic causes of undiagnosed developmental disorders, the integrated ethics research explores the ethical implications of whole genome research. The DDD study is funded by an award from the Health Innovation Challenge Fund [grant number HICF-1009-003] and the Wellcome Trust Sanger Institute [grant number WT077008]. The research team acknowledges the support of the National Institute for Health Research, through the Comprehensive Clinical Research Network. The views expressed in this paper are those of the author alone and do not represent those of the funders nor employer. Dr Middleton would like to acknowledge the support of the following people in reviewing drafts of this paper: Dr Helen Firth, Dr Nigel Carter, Prof Mike Parker, Dr Don Powell and Ros Cook.

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  1. Ethics Researcher and Registered Genetic Counselor, Wellcome Trust Sanger Institute, Cambridge, CB10 1SA, United Kingdom

    Anna Middleton

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  1. Anna Middleton
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Middleton, A. Communication about DTC Testing: Commentary on a ‘Family Experience of Personal Genomics’. J Genet Counsel 21, 392–398 (2012). https://doi.org/10.1007/s10897-011-9472-8

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