Hereditary cancers in children and ethical and psychosocial implications

MacDonald, Deborah J.; Lessick, Mira

doi:10.1053/jpdn.2000.8044

Cited by 24 publications

(35 citation statements)

References 17 publications

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“…The primary benefit proposed in seven (70%) articles was that genetic testing may lead to early risk-reducing screening or treatment, which might positively impact the child's psychological well-being (for example, by reducing anxiety or disease-related worry). 3,16,29,[43][44][45][46] Themes of relief from uncertainty after acquiring genetic information were noted in three articles. 3,16,44 Eight (80%) articles presented the view that a reduction in concern about the future may result from children acquiring genetic information.…”

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

“…3,16,29,[43][44][45][46] Themes of relief from uncertainty after acquiring genetic information were noted in three articles. 3,16,44 Eight (80%) articles presented the view that a reduction in concern about the future may result from children acquiring genetic information. In particular, authors highlighted the benefits of being able to plan employment, social, educational, and economic endeavors according to the genetic status of the patients.…”

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

“…In particular, authors highlighted the benefits of being able to plan employment, social, educational, and economic endeavors according to the genetic status of the patients. 3,16,17,29,43,44,46,47 The primary proposed negative outcome of genetic testing was increased anxiety about the child's future health, noted as 28 No psychological impact between carriers, noncarriers, or those with unknown status. 36 Few met full "psychiatric diagnosis" and no differences in problem scores 39 Reduced uncertainty learning of test result, 3,16 relief from fear if negative, 3 or knowing treatment available if positive 44 Few worried about worse health 41 or developing the disease they were genetically predisposed to.…”

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

“…3,16,17,29,43,44,46,47 The primary proposed negative outcome of genetic testing was increased anxiety about the child's future health, noted as 28 No psychological impact between carriers, noncarriers, or those with unknown status. 36 Few met full "psychiatric diagnosis" and no differences in problem scores 39 Reduced uncertainty learning of test result, 3,16 relief from fear if negative, 3 or knowing treatment available if positive 44 Few worried about worse health 41 or developing the disease they were genetically predisposed to. 42 Some hoped/expected medication to help 41 Promotes psychological adjustment 17,46 and child autonomy 17,46 No behavioral problems at follow-up, 25,35 regardless of test results, 28 and decreased in some at follow-up.…”

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

“…There are clear ethical concerns regarding children's potential loss of autonomy if their parents consent to genetic testing on their behalf. 16,17 This is on the basis that children tested at their parents' request lose their right to make the decision for themselves upon reaching maturity. Yet, in some cases, genetic testing in childhood is important.…”

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The psychological impact of genetic information on children: a systematic review

Wakefield

Hanlon

Tucker

et al. 2016

Genetics in Medicine

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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.

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Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

Section: What Is the Concordance Between Empirical Data On The Impactmentioning

confidence: 99%

mentioning

confidence: 99%

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The psychological impact of genetic information on children: a systematic review

Wakefield

Hanlon

Tucker

et al. 2016

Genetics in Medicine

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Hereditary diffuse gastric cancer

Lynch

Kaurah

Wirtzfeld

et al. 2008

Cancer

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Introduction: The objective of this study was to identify the pattern of neurological deficits and document electrophysiological changes in women with macromastia. Methods: Patients with macromastia and neurological complaints underwent clinical evaluation and electrodiagnostic (EDx) studies of the upper limbs. Results: Findings include low‐amplitude medial antebrachial cutaneous (MACN) sensory nerve action potentials (SNAPs) and median compound muscle action potentials (CMAPs) and chronic denervation changes in the bilateral abductor pollicis brevis (APB) muscles on needle electrode examination (NEE), indicating axonal loss in the bilateral T1 distribution. Conclusions: The EDx data are in keeping with lesions involving bilateral T1 anterior primary rami (APR). Potential sites of compromise of the T1 APR are discussed. Further study of the effect of treatment for macromastia on the clinical and EDx findings is proposed. Muscle Nerve, 2013

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The psychological impact of genetic testing in childhood cancer: A systematic review

Van Hoyweghen,

BM Claes,

de Putter

et al. 2023

Psycho-Oncology

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ObjectiveCancer predisposition syndromes are being more frequently recognized in the etiology of pediatric oncology and genetic‐related technologies are evolving rapidly, leading to an increasing availability of genetic testing for families. This systematic review assessed the psychological impact of genetic testing on children and parents in the context of childhood cancer.MethodsSearches were performed using three databases (Web of Science, Pubmed and Embase) to identify relevant empirical studies. Following Cochrane guidelines, we screened 3838 articles and identified 18 eligible studies, representing the perspectives of children and/or parents.ResultsThe included studies described the impact of genetic testing in different contexts (e.g. predictive testing and diagnostic testing) and in different subgroups, (e.g. carriers and non‐carriers). Overall, the studies did not identify clinically‐relevant long‐term increases in negative emotions (depression, anxiety, distress, uncertainty, guilt) as a result of genetic testing. Negative emotions were typically time‐limited and generally occurred in families with particular characteristics (e.g. those with a history of multiple cancer diagnoses, families receiving an unfavorable result for one child and a favorable result in siblings, and those with pre‐existing mental health difficulties). Positive emotions (hopefulness, relief and peace of mind) were also reported. Knowing their genetic risk status appeared to help to foster empowerment among families, regardless of the result and any associated emotions.ConclusionsGenetic testing in pediatric oncology does not appear to cause significant additional harm and can lead to positive outcomes. Clinicians need to be especially attentive when counseling families at increased risk of distress.

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Hereditary cancers in children and ethical and psychosocial implications

Cited by 24 publications

References 17 publications

The psychological impact of genetic information on children: a systematic review

The psychological impact of genetic information on children: a systematic review

Hereditary diffuse gastric cancer

The psychological impact of genetic testing in childhood cancer: A systematic review

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