Literature DB >> 22403084

Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments.

Cara Mand1, Lynn Gillam, Martin B Delatycki, Rony E Duncan.   

Abstract

Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content analysis was employed to catalogue discrete arguments within these papers. Novel conclusions were drawn from this review. While the debate's first voices were raised in opposition of testing and their arguments have retained currency over many years, arguments in favour of testing, which appeared sporadically at first, have gained momentum more recently. Most arguments on both sides are testable empirical claims, so far untested, rather than abstract ethical or philosophical positions. The dispute, therein, lies not so much in whether minors should be permitted to access predictive genetic testing but whether these empirical claims on the relative benefits or harms of testing should be assessed.

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Year:  2012        PMID: 22403084     DOI: 10.1136/medethics-2011-100055

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  19 in total

1.  Clinical Management of Pediatric Genomic Testing.

Authors:  Ingrid A Holm
Journal:  Curr Genet Med Rep       Date:  2014-12-01

2.  Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.

Authors:  Kurt D Christensen; Sarah K Savage; Noelle L Huntington; Elissa R Weitzman; Sonja I Ziniel; Phoebe L Bacon; Cara N Cacioppo; Robert C Green; Ingrid A Holm
Journal:  J Empir Res Hum Res Ethics       Date:  2017-04       Impact factor: 1.742

Review 3.  Disclosure of incidental findings from next-generation sequencing in pediatric genomic research.

Authors:  Ruqayyah Abdul-Karim; Benjamin E Berkman; David Wendler; Annette Rid; Javed Khan; Tom Badgett; Sara Chandros Hull
Journal:  Pediatrics       Date:  2013-02-11       Impact factor: 7.124

Review 4.  Paediatric genomics: diagnosing rare disease in children.

Authors:  Caroline F Wright; David R FitzPatrick; Helen V Firth
Journal:  Nat Rev Genet       Date:  2018-02-05       Impact factor: 53.242

5.  Adolescent and Parental Attitudes About Return of Genomic Research Results: Focus Group Findings Regarding Decisional Preferences.

Authors:  Michelle L McGowan; Cynthia A Prows; Melissa DeJonckheere; William B Brinkman; Lisa Vaughn; Melanie F Myers
Journal:  J Empir Res Hum Res Ethics       Date:  2018-05-28       Impact factor: 1.742

6.  Psychosocial Adjustment and Perceived Risk Among Adolescent Girls From Families With BRCA1/2 or Breast Cancer History.

Authors:  Angela R Bradbury; Linda Patrick-Miller; Lisa A Schwartz; Brian L Egleston; Dare Henry-Moss; Susan M Domchek; Mary B Daly; Lisa Tuchman; Cynthia Moore; Paula K Rauch; Rebecca Shorter; Kelsey Karpink; Colleen Burke Sands
Journal:  J Clin Oncol       Date:  2016-08-22       Impact factor: 44.544

7.  The Influence of Adolescence on Parents' Perspectives of Testing and Discussing Inherited Cancer Predisposition.

Authors:  Corinna L Schultz; Melissa A Alderfer; Robert B Lindell; Zachary McClain; Kristin Zelley; Kim E Nichols; Carol A Ford
Journal:  J Genet Couns       Date:  2018-06-16       Impact factor: 2.537

8.  Traditional roles in a non-traditional setting: genetic counseling in precision oncology.

Authors:  Jessica N Everett; Shanna L Gustafson; Victoria M Raymond
Journal:  J Genet Couns       Date:  2014-03-01       Impact factor: 2.537

Review 9.  Genome-Wide Sequencing for Prenatal Detection of Fetal Single-Gene Disorders.

Authors:  Ignatia B van den Veyver; Christine M Eng
Journal:  Cold Spring Harb Perspect Med       Date:  2015-08-07       Impact factor: 6.915

10.  Addressing the ethical challenges in genetic testing and sequencing of children.

Authors:  Ellen Wright Clayton; Laurence B McCullough; Leslie G Biesecker; Steven Joffe; Lainie Friedman Ross; Susan M Wolf
Journal:  Am J Bioeth       Date:  2014       Impact factor: 11.229

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