Abstract

Purpose:

This review assessed the psychological impact that acquiring personal and familial genetic information has on children. We also examined the concordance between the available empirical data and clinical guidance/perspectives articles.

Methods:

We screened 591 abstracts and identified 13 studies, representing 966 children. Ten studies assessed 386 children tested for familial adenomatous polyposis (n = 171), hereditary cardiac disease (n = 134), and other conditions (n = 81). Three studies addressed the impact of BRCA1/2 testing of a family member on 580 children.

Results:

Serious adverse psychological outcomes were uncommon. Most studies reported no significant increase in mean anxiety, depression, and distress scores (n = 8, 61.5%); however, some children experienced intrafamilial distress, discrimination, and guilt/regret. Some children were more concerned about their own health or their family members’ health. There was limited consistency between anticipated adverse impact and empirical data.

Conclusions:

The review identified little conclusive evidence of deleterious psychological consequences for children acquiring genetic information. However, there is a lack of data regarding genetic testing for conditions that may not be treatable/modifiable, as well as a dearth of longitudinal studies. Therefore, clinical caution remains essential for the ethical integration of genetic testing into pediatrics. Further research assessing the potential positive and negative effects of genetic testing in childhood is warranted.

Genet Med 18 8, 755–762.

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Acknowledgements

C.E.W. is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501) and an Early Career Development fellowship from the Cancer Institute of NSW (ID: 11/ECF/3–43). The Behavioral Sciences Unit is proudly supported by the Kids with Cancer Foundation. We also acknowledge the contribution of Bridget Cavanagh (B.C.) in the process of article selection and review.

Author information

Affiliations

  1. Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, University of New South Wales, Sydney, Australia

    • Claire E. Wakefield
    • , Lucy V. Hanlon
    • , Christina Signorelli
    • , Jordana K. McLoone
    •  & Richard J. Cohn
  2. Behavioral Sciences Unit Proudly Supported by the Kids with Cancer Foundation, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, Australia

    • Claire E. Wakefield
    • , Christina Signorelli
    •  & Jordana K. McLoone
  3. Hereditary Cancer Clinic, Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia

    • Katherine M. Tucker
  4. Prince of Wales Clinical School, University of New South Wales, Sydney, Australia

    • Katherine M. Tucker
  5. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA

    • Andrea F. Patenaude
  6. Department of Psychiatry, Harvard Medical School, Boston, Massachusetts, USA

    • Andrea F. Patenaude
  7. Kids Cancer Centre, Sydney Children’s Hospital, Randwick, Australia

    • Richard J. Cohn

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Correspondence to Claire E. Wakefield.

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DOI

https://doi.org/10.1038/gim.2015.181