Literature DB >> 31548217

Discouraging Elective Genetic Testing of Minors: A Norm under Siege in a New Era of Genomic Medicine.

Laura Hercher1.   

Abstract

Consistently, the field of genetic counseling has advocated that parents be advised to defer elective genetic testing of minors until adulthood to prevent a range of potential harms, including stigma, discrimination, and the loss of the child's ability to decide for him- or herself as an adult. However, consensus around the policy of "defer-when-possible" obscures the extent to which this norm is currently under siege. Increasingly, routine use of full or partial genome sequencing challenges our ability to control what is discovered in childhood or, when applied in a prenatal context, even before birth. The expansion of consumer-initiated genetic testing services challenges our ability to restrict what is available to minors. As the barriers to access crumble, medical professionals should proceed with caution, bearing in mind potential risks and continuing to assess the impact of genetic testing on this vulnerable population.
Copyright © 2020 Cold Spring Harbor Laboratory Press; all rights reserved.

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Year:  2020        PMID: 31548217      PMCID: PMC7197418          DOI: 10.1101/cshperspect.a036657

Source DB:  PubMed          Journal:  Cold Spring Harb Perspect Med        ISSN: 2157-1422            Impact factor:   6.915


  46 in total

1.  In defence of ignorance: genetic information and the right not to know.

Authors:  Graeme T Laurie
Journal:  Eur J Health Law       Date:  1999-06

2.  Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.

Authors:  Graeme Laurie
Journal:  J Law Med Ethics       Date:  2014       Impact factor: 1.718

Review 3.  Parents' attitudes toward genetic testing of children for health conditions: A systematic review.

Authors:  Q Lim; B C McGill; V F Quinn; K M Tucker; D Mizrahi; A F Patenaude; M Warby; R J Cohn; C E Wakefield
Journal:  Clin Genet       Date:  2017-03-30       Impact factor: 4.438

Review 4.  Genetic essentialism: on the deceptive determinism of DNA.

Authors:  Ilan Dar-Nimrod; Steven J Heine
Journal:  Psychol Bull       Date:  2011-09       Impact factor: 17.737

5.  The right not to know: an autonomy based approach.

Authors:  R Andorno
Journal:  J Med Ethics       Date:  2004-10       Impact factor: 2.903

6.  Return of secondary genomic findings vs patient autonomy: implications for medical care.

Authors:  Robert Klitzman; Paul S Appelbaum; Wendy Chung
Journal:  JAMA       Date:  2013-07-24       Impact factor: 56.272

7.  Myriad take two: Can genomic databases remain secret?

Authors:  Christi J Guerrini; Amy L McGuire; Mary A Majumder
Journal:  Science       Date:  2017-05-12       Impact factor: 47.728

Review 8.  The psychological impact of genetic information on children: a systematic review.

Authors:  Claire E Wakefield; Lucy V Hanlon; Katherine M Tucker; Andrea F Patenaude; Christina Signorelli; Jordana K McLoone; Richard J Cohn
Journal:  Genet Med       Date:  2016-01-07       Impact factor: 8.822

9.  The BabySeq project: implementing genomic sequencing in newborns.

Authors:  Ingrid A Holm; Pankaj B Agrawal; Ozge Ceyhan-Birsoy; Kurt D Christensen; Shawn Fayer; Leslie A Frankel; Casie A Genetti; Joel B Krier; Rebecca C LaMay; Harvey L Levy; Amy L McGuire; Richard B Parad; Peter J Park; Stacey Pereira; Heidi L Rehm; Talia S Schwartz; Susan E Waisbren; Timothy W Yu; Robert C Green; Alan H Beggs
Journal:  BMC Pediatr       Date:  2018-07-09       Impact factor: 2.125

10.  Predictive genetic testing of minors: evidence and experience with families.

Authors:  Barbara B Biesecker
Journal:  Genet Med       Date:  2016-01-28       Impact factor: 8.822

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  2 in total

Review 1.  Bridging the Gap between Scientific Advancement and Real-World Application: Pediatric Genetic Counseling for Common Syndromes and Single-Gene Disorders.

Authors:  Julie A McGlynn; Elinor Langfelder-Schwind
Journal:  Cold Spring Harb Perspect Med       Date:  2020-10-01       Impact factor: 5.159

2.  Measures of Utility Among Studies of Genomic Medicine for Critically Ill Infants: A Systematic Review.

Authors:  Katharine Press Callahan; Rebecca Mueller; John Flibotte; Emily A Largent; Chris Feudtner
Journal:  JAMA Netw Open       Date:  2022-08-01
  2 in total

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