Literature DB >> 17024669

Lost in transition: challenges in the expanding field of adult genetics.

Matthew R G Taylor1, Janice G Edwards, Lisa Ku.   

Abstract

It is increasingly clear that medical genetics has broad relevance in adult clinical medicine. More adult patients with genetic conditions are being recognized, genetic testing for adult-onset genetic conditions is expanding, and children with genetic conditions are now more likely to survive to adulthood. While the number of patients who could benefit from medical genetic services increases, adult care providers are less well educated about clinical genetics and are not sufficiently prepared to meet the growing needs of this population. Genetics professionals may also be ill-suited for this challenge, since geneticists and genetic counselors have traditionally had greater experience in pediatric and prenatal settings. Communication between primary care physicians who treat adults and the genetics community is currently suboptimal and the identification and subsequent referral of adult patients for genetic services need improvement. Finally, published guidelines that address how to deliver genetic services to adult patients are unavailable for many genetic conditions. In this article we address the challenges of transitioning genetics services from traditional, and largely pediatric-based models to paradigms that can best address the needs of adult patients with genetic conditions. Potential solutions and the practicality of implementation of a team-based approach to adult genetic medicine, including the application of genetic counseling, are also discussed. (c) 2006 Wiley-Liss, Inc.

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Year:  2006        PMID: 17024669     DOI: 10.1002/ajmg.c.30105

Source DB:  PubMed          Journal:  Am J Med Genet C Semin Med Genet        ISSN: 1552-4868            Impact factor:   3.908


  17 in total

1.  Caregiver and adult patient perspectives on the importance of a diagnosis of 22q11.2 deletion syndrome.

Authors:  G Costain; E W C Chow; P N Ray; A S Bassett
Journal:  J Intellect Disabil Res       Date:  2011-12-06

2.  Access to genetic testing and genetic counseling in vulnerable populations: the d/Deaf and hard of hearing population.

Authors:  Sandra Cooke-Hubley; Victor Maddalena
Journal:  J Community Genet       Date:  2011-05-01

3.  Introduction to the special issue: psychological aspects of genomics and child health.

Authors:  Kenneth P Tercyak
Journal:  J Pediatr Psychol       Date:  2008-12-06

4.  Spinal cord issues in adult patients with MPS: transition of care survey.

Authors:  Kemel A Ghotme; Fernando Alvarado-Gomez; Christina Lampe; Klane K White; Martha Solano-Villareal; Roberto Giugliani; Paul R Harmatz
Journal:  Childs Nerv Syst       Date:  2018-05-27       Impact factor: 1.475

Review 5.  The practice of adult genetics: a 7-year experience from a single center.

Authors:  Tanya N Eble; Sandesh C S Nagamani; Luis M Franco; Sharon E Plon; Maria Blazo; Shweta U Dhar
Journal:  Am J Med Genet A       Date:  2012-12-13       Impact factor: 2.802

6.  Reproductive Health Issues for Adults with a Common Genomic Disorder: 22q11.2 Deletion Syndrome.

Authors:  Chrystal Chan; Gregory Costain; Lucas Ogura; Candice K Silversides; Eva W C Chow; Anne S Bassett
Journal:  J Genet Couns       Date:  2015-01-13       Impact factor: 2.537

7.  Perceived burden and neuropsychiatric morbidities in adults with 22q11.2 deletion syndrome.

Authors:  D J Karas; G Costain; E W C Chow; A S Bassett
Journal:  J Intellect Disabil Res       Date:  2012-10-29

8.  The value of genetic testing: beyond clinical utility.

Authors:  Barbara Lerner; Nell Marshall; Sabine Oishi; Andrew Lanto; Martin Lee; Alison B Hamilton; Elizabeth M Yano; Maren T Scheuner
Journal:  Genet Med       Date:  2016-12-15       Impact factor: 8.822

9.  Clinical applications of schizophrenia genetics: genetic diagnosis, risk, and counseling in the molecular era.

Authors:  Gregory Costain; Anne S Bassett
Journal:  Appl Clin Genet       Date:  2012-02-20

10.  Array comparative genomic hybridization: results from an adult population with drug-resistant epilepsy and co-morbidities.

Authors:  Elizabeth C Galizia; Maithili Srikantha; Rodger Palmer; Jonathan J Waters; Nicholas Lench; Caroline Mackie Ogilvie; Dalia Kasperavičiūtė; Lina Nashef; Sanjay M Sisodiya
Journal:  Eur J Med Genet       Date:  2012-01-28       Impact factor: 2.708

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