+ Site Statistics
+ Search Articles
+ PDF Full Text Service
How our service works
Request PDF Full Text
+ Follow Us
Follow on Facebook
Follow on Twitter
Follow on LinkedIn
+ Subscribe to Site Feeds
Most Shared
PDF Full Text
+ Translate
+ Recently Requested

Factors perceived to influence parental decision-making regarding presymptomatic testing of children at risk for treatable adult-onset genetic disorders



Factors perceived to influence parental decision-making regarding presymptomatic testing of children at risk for treatable adult-onset genetic disorders



Issues in Comprehensive Pediatric Nursing 21(1): 19-34



The purpose of this study was to identify those critical factors that genetic nurse experts perceived could influence parental decision-making to seek or to reject presymptomatic testing of their children at risk for treatable adult-onset genetic disorders (neurofibromatosis 2, familial adenomatous polyposis, and von Hippel Lindeau disorder). Perceptions of ISONG genetic nurse specialists were surveyed through a modified Delphi technique and four major themes emerged: personal experience with severity of genetic disorder, receiving accurate information from credible sources, availability of quality treatment, and risk perception. Currently, there is a paucity of extant research that identifies critical factors influencing parental decision-making about this relatively new testing alternative for children. Thus, these experts are an important source of valuable information needed to identify such factors. Findings may be useful to design a qualitative study with parents to investigate this issue.

Please choose payment method:






(PDF emailed within 1 workday: $29.90)

Accession: 046069402

Download citation: RISBibTeXText

PMID: 10188423


Related references

Factors Perceived To Influence Parental Decision-Making Regarding Presymptomatic Testing Of Children At Risk For Treatable Adult-Onset Genetic Disorders. Issues in Comprehensive Pediatric Nursing 21(1): 19-34, 1998

Perceived influence, decision-making and access to information in family services as factors of parental empowerment: a cross-sectional study of parents with young children. Scandinavian Journal of Caring Sciences 30(2): 290-302, 2016

Is presymptomatic genetic testing required in children at risk of late-onset diseases?. Archives de Pediatrie 10(Suppl. 1): 83s, 2003

Testing the children: do non-genetic health-care providers differ in their decision to advise genetic presymptomatic testing on minors? A cross-sectional study in five countries in the European Union. Genetic Testing and Molecular Biomarkers 13(3): 367-376, 2009

Presymptomatic testing for late-onset genetic disorders: lessons from Huntington's disease. The Faseb Journal 6(10): 2818-2819, 1992

Presymptomatic testing for late onset genetic disorders lesson from huntington's disease. FASEB Journal 6(10): 2818-2819, 1992

Genetic testing of children at risk for adult onset conditions: when is testing indicated?. Journal of Genetic Counseling 17(6): 523-525, 2008

What counts as effective genetic counselling for presymptomatic testing in late-onset disorders? A study of the consultand's perspective. Journal of Genetic Counseling 22(4): 437-447, 2013

Risk reduction and health promotion behaviors following genetic testing for adult-onset disorders. Genetic Testing 11(2): 111-123, 2007

Genetic counseling and testing for hereditary cancer risk in young adult women: Facilitating autonomy and informed decision making is key. Gynecologic Oncology Reports 14: 44-45, 2015

Quality assessment of genetic counseling process in the context of presymptomatic testing for late-onset disorders: a thematic analysis of three review articles. Genetic Testing and Molecular Biomarkers 16(1): 36-45, 2012

In response to Peshkin et al. "Genetic counseling and testing for hereditary cancer risk in young adult women: Facilitating autonomy and informed decision making is key". Gynecologic Oncology Reports 14: 46, 2015

Attitudes and knowledge about presymptomatic genetic testing among individuals at high risk for familial, early-onset Alzheimer's disease. Genetic Testing 7(1): 45-47, 2003

Autism spectrum disorder and genetic testing: Parental perceptions and decision-making. Journal for Specialists in Pediatric Nursing 23(2): E12211, 2018

Presymptomatic testing for adult onset polycystic kidney disease in at-risk kidney transplant donors. American Journal of Medical Genetics 40(4): 425-428, 1991