Literature DB >> 18704981

Predictive genetic testing in minors for adult-onset genetic diseases.

Pascal Borry1, Tom Goffin, Herman Nys, Kris Dierickx.   

Abstract

This article analyses the ethical discussion of predictive genetic testing in minors for genetic conditions for which there is no phenotypic evidence for disease at the considered time of testing and for which there is currently no treatment available to prevent or forestall the development of the condition. After a presentation of the position of various professional guidelines, we discuss the position and arguments that have been advanced in a recent article that defends a position that is opposed to the professional recommendations. In the article, we discuss the position of voluntary choices and autonomous and informed decision-making in a context of open communication. Thereafter, we analyze the nonmedical benefits and harm related to this type of testing. Finally, we critically analyze 4 arguments: the potential provision of good news if a test is performed, the unbearability of knowing, identity and adjustment, and parental anxiety and uncertainty.

Entities:  

Mesh:

Year:  2008        PMID: 18704981     DOI: 10.1002/msj.20038

Source DB:  PubMed          Journal:  Mt Sinai J Med        ISSN: 0027-2507


  18 in total

1.  Genetic testing in asymptomatic minors: background considerations towards ESHG Recommendations.

Authors:  Pascal Borry; Gerry Evers-Kiebooms; Martina C Cornel; Angus Clarke; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2009-03-11       Impact factor: 4.246

Review 2.  Impact of presymptomatic genetic testing on young adults: a systematic review.

Authors:  Lea Godino; Daniela Turchetti; Leigh Jackson; Catherine Hennessy; Heather Skirton
Journal:  Eur J Hum Genet       Date:  2015-07-15       Impact factor: 4.246

3.  Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?

Authors:  Heidi Carmen Howard; Denise Avard; Pascal Borry
Journal:  Eur J Hum Genet       Date:  2011-06-01       Impact factor: 4.246

4.  Psychosocial aspects of predictive genetic testing for acute intermittent porphyria in norwegian minors.

Authors:  Janice Andersen; Sverre Sandberg; Maalfrid Raaheim; Eva Gjengedal
Journal:  JIMD Rep       Date:  2011-06-22

Review 5.  Controversies in communication of genetic screening results for cancer: a report from the American Society of Preventive Oncology's Screening Special Interest Group (ASPO's 33rd Annual Meeting, March 8 to 10, 2009, Tampa, Florida).

Authors:  Linda Patrick-Miller; Angela R Bradbury; Mary Beth Terry
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2010-02       Impact factor: 4.254

6.  Quality in genetic counselling for presymptomatic testing--clinical guidelines for practice across the range of genetic conditions.

Authors:  Heather Skirton; Lesley Goldsmith; Leigh Jackson; Aad Tibben
Journal:  Eur J Hum Genet       Date:  2012-08-15       Impact factor: 4.246

7.  When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response.

Authors:  Angela R Bradbury; Linda Patrick-Miller; Brian L Egleston; Olufunmilayo I Olopade; Mary B Daly; Cynthia W Moore; Colleen B Sands; Helen Schmidheiser; Preethi K Kondamudi; Maia Feigon; Comfort N Ibe; Christopher K Daugherty
Journal:  Cancer       Date:  2012-01-09       Impact factor: 6.860

Review 8.  What is the role of genetic testing in movement disorders practice?

Authors:  Susanne A Schneider; Christine Klein
Journal:  Curr Neurol Neurosci Rep       Date:  2011-08       Impact factor: 5.081

9.  Genetic testing of children for familial cancers: a comparative legal perspective on consent, communication of information and confidentiality.

Authors:  Roy Gilbar
Journal:  Fam Cancer       Date:  2009-07-17       Impact factor: 2.375

Review 10.  Growing up in the genomic era: implications of whole-genome sequencing for children, families, and pediatric practice.

Authors:  Christopher H Wade; Beth A Tarini; Benjamin S Wilfond
Journal:  Annu Rev Genomics Hum Genet       Date:  2013-07-15       Impact factor: 8.929

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