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The psychological impact of genetic information on children: a systematic review
Claire E Wakefield1,2, Lucy V Hanlon1, Katherine M Tucker3,4
1Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia.
Insights
Most children show no significant psychological distress from genetic information. However, some experience guilt or concern, highlighting the need for careful clinical integration and further research into genetic testing impacts.
Area of Science:
- Pediatric Psychology
- Genetics
- Bioethics
Background:
- Understanding the psychological effects of genetic information on children is crucial for ethical healthcare practices.
- Clinical guidance often anticipates adverse reactions to genetic testing, but empirical data requires examination.
Purpose of the Study:
- To review the psychological impact of acquiring personal and familial genetic information on children.
- To compare empirical findings with existing clinical guidance and perspectives on pediatric genetic testing.
Main Methods:
- Systematic screening of 591 abstracts to identify 13 relevant studies involving 966 children.
- Analysis of studies covering genetic testing for conditions like familial adenomatous polyposis, hereditary cardiac disease, and BRCA1/2 mutations.
Main Results:
- Serious adverse psychological outcomes were infrequent, with most studies reporting no significant increase in anxiety, depression, or distress.
- Some children experienced intrafamilial distress, discrimination, guilt, or increased health-related concerns.
- Limited consistency was observed between predicted adverse impacts and empirical data.
Conclusions:
- There is minimal conclusive evidence of significant psychological harm to children from acquiring genetic information.
- Further research is needed, particularly for untreatable conditions and long-term effects, emphasizing the need for clinical caution.
- Ethical integration of genetic testing in pediatrics requires ongoing evaluation of both positive and negative psychological effects.
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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