Psychological risks of genetically testing children for a hereditary cancer syndrome

Grosfeld, F.J.M.; Lips, Cornelis J.M.; Beemer, Frits A.; Spijker, H. G. Van; Brouwers-Smalbraak, G.J.; Kroode, H.F.J. ten

doi:10.1016/s0738-3991(97)00063-3

Cited by 33 publications

(28 citation statements)

References 4 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%

“…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. 35 "Good" social acceptance and bullying (P < 0.001) 38 Reduction in worry/uncertainty about future life planning (education, employment, social, and economic plans) and health planning (early or presymptomatic intervention) 3,16,17,29,43,44,46,47 Majority only thought/worried about becoming sick a 'little bit' or less. 25 Reduced worry and situational distress after negative results.…”

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

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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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%

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

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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Parents' responses to disclosure of genetic test results of their children

et al. 2000

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The psychological reactions of 22 parental couples and 3 single parents were investigated after disclosure of genetic test results of their children. The children were tested for the early-onset, monogenetic cancer disorder multiple endocrine neoplasia type 2. Participants came from 13 different families and were aged between 28 and 47 years. Parents who were informed that their child was a gene carrier reacted with resignation, showed moderate to high levels of test-related and general anxiety, but few psychological complaints. Daily activities were disturbed in 43% of the parents with carrier-children. There was little disruption of the parents' future perspective, apart from some socioeconomic disadvantages and increased parental concern for the carrier-children. Most parents with carrier-children showed restraint with respect to short-term prophylactic treatment. Parents with favorable test results showed significantly less anxiety and no disturbance in their daily activities. They did not, however, seem to be reassured by the DNA test result. These parents questioned the reliability of the DNA test, wanted confirmation of the test results, and were eager to continue screening of their noncarrier children. Parents, especially those with a lower level of education and/or a pessimistic view of the future, were distressed by unfavorable test results. Additional counseling is advised to prevent parents of carrier-children worrying unnecessarily, or parents with children in whom the disease gene was not found being not reassured. Am. J. Med. Genet. 94:316-323, 2000.

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Genetic Testing of Children

Procter¹

2006

Encyclopedia of Life Sciences

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Psychological risks of genetically testing children for a hereditary cancer syndrome

Cited by 33 publications

References 4 publications

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

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

Parents' responses to disclosure of genetic test results of their children

Genetic Testing of Children

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