Literature DB >> 16865560

Predictive testing of eighteen year olds: counseling challenges.

Clara L Gaff1, Elly Lynch, Lesley Spencer.   

Abstract

Genetic counseling of teenagers is challenging and complex. The ability to think abstractly, a sense of self and independence from family all develop during adolescence. Predictive genetic testing counseling protocols presuppose that these qualities exist, requiring the at-risk individual to consider the short and long term consequences of testing as well as their motivations. Eighteen year olds are in transition from adolescence to adulthood; eligible for predictive genetic testing, they may not yet be independent of their family or able to articulate their feelings. This paper presents case studies from the authors' clinical practice to illustrate some of the difficulties faced by genetic counselors when 18 year olds request predictive testing for Hereditary Non-Polyposis Colorectal Cancer. By reflecting upon their experiences with these young adults and their families, the authors' intention is to generate discussion about genetic counseling strategies, particularly for predictive genetic testing, that are both age-appropriate and family-sensitive.

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Year:  2006        PMID: 16865560     DOI: 10.1007/s10897-006-9028-5

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  23 in total

1.  Concern for families and individuals in clinical genetics.

Authors:  M Parker; A Lucassen
Journal:  J Med Ethics       Date:  2003-04       Impact factor: 2.903

2.  Predictive genetic testing for hereditary non-polyposis colorectal cancer: uptake and long-term satisfaction.

Authors:  K Aktan-Collan; J P Mecklin; H Järvinen; M Nyström-Lahti; P Peltomäki; I Söderling; A Uutela; A de la Chapelle; H Kääriäinen
Journal:  Int J Cancer       Date:  2000-01-20       Impact factor: 7.396

3.  Predictive genetic testing and beyond: a theory of engagement.

Authors:  Marion McAllister
Journal:  J Health Psychol       Date:  2002-09

4.  Facilitating family communication about predictive genetic testing: probands' perceptions.

Authors:  Clara L Gaff; Veronica Collins; Tiffany Symes; Jane Halliday
Journal:  J Genet Couns       Date:  2005-04       Impact factor: 2.537

5.  Genetic counseling for pregnant adolescents.

Authors:  T Peters-Brown; L Fry-Mehltretter
Journal:  J Genet Couns       Date:  1996-12       Impact factor: 2.537

Review 6.  Recommendations for follow-up care of individuals with an inherited predisposition to cancer. I. Hereditary nonpolyposis colon cancer. Cancer Genetics Studies Consortium.

Authors:  W Burke; G Petersen; P Lynch; J Botkin; M Daly; J Garber; M J Kahn; A McTiernan; K Offit; E Thomson; C Varricchio
Journal:  JAMA       Date:  1997-03-19       Impact factor: 56.272

Review 7.  Hereditary cancers in children and ethical and psychosocial implications.

Authors:  D J MacDonald; M Lessick
Journal:  J Pediatr Nurs       Date:  2000-08       Impact factor: 2.145

Review 8.  Psychological consequences of predictive genetic testing: a systematic review.

Authors:  M Broadstock; S Michie; T Marteau
Journal:  Eur J Hum Genet       Date:  2000-10       Impact factor: 4.246

9.  "Family matters": a conceptual framework for genetic testing in children.

Authors:  Allyn McConkie-Rosell; Gail A Spiridigliozzi
Journal:  J Genet Couns       Date:  2004-02       Impact factor: 2.537

10.  Parents' responses to predictive genetic testing in their children: report of a single case study.

Authors:  S Michie; V McDonald; M Bobrow; C McKeown; T Marteau
Journal:  J Med Genet       Date:  1996-04       Impact factor: 6.318

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  17 in total

1.  Counseling adolescents and the challenges for genetic counselors.

Authors:  Alice Callard; Jessica Williams; Heather Skirton
Journal:  J Genet Couns       Date:  2011-12-03       Impact factor: 2.537

2.  The challenge of developmentally appropriate care: predictive genetic testing in young people for familial adenomatous polyposis.

Authors:  Rony E Duncan; Lynn Gillam; Julian Savulescu; Robert Williamson; John G Rogers; Martin B Delatycki
Journal:  Fam Cancer       Date:  2009-09-17       Impact factor: 2.375

Review 3.  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

4.  Presymptomatic genetic testing for hereditary cancer in young adults: a survey of young adults and parents.

Authors:  Lea Godino; Daniela Turchetti; Leigh Jackson; Catherine Hennessy; Heather Skirton
Journal:  Eur J Hum Genet       Date:  2018-10-04       Impact factor: 4.246

5.  "There's a whole different way of working with adolescents": interviews with Australian Genetic Counselors about their experiences with adolescent clients.

Authors:  Cheryl Tse; Margaret Sahhar; Jane Wallace; Rony E Duncan
Journal:  J Genet Couns       Date:  2013-05-18       Impact factor: 2.537

6.  A framework for youth-friendly genetic counseling.

Authors:  Mary-Anne Young; Kate Thompson; Jeremy Lewin; Lucy Holland
Journal:  J Community Genet       Date:  2019-11-05

7.  Brief assessment of parents' attitudes toward testing minor children for hereditary breast/ovarian cancer genes: development and validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS).

Authors:  Beth N Peshkin; Tiffani A DeMarco; Judy E Garber; Heiddis B Valdimarsdottir; Andrea F Patenaude; Katherine A Schneider; Marc D Schwartz; Kenneth P Tercyak
Journal:  J Pediatr Psychol       Date:  2008-04-01

8.  Experience with genetic counseling: the adolescent perspective.

Authors:  Amanda Pichini; Cheryl Shuman; Karen Sappleton; Miriam Kaufman; David Chitayat; Riyana Babul-Hirji
Journal:  J Genet Couns       Date:  2015-11-17       Impact factor: 2.537

9.  Experiences of teens living in the shadow of Huntington Disease.

Authors:  Kathleen J H Sparbel; Martha Driessnack; Janet K Williams; Debra L Schutte; Toni Tripp-Reimer; Meghan McGonigal-Kenney; Lori Jarmon; Jane S Paulsen
Journal:  J Genet Couns       Date:  2008-03-18       Impact factor: 2.537

10.  Can we test for hereditary cancer at 18 years when we start surveillance at 25? Patient reported outcomes.

Authors:  Aisha S Sie; Judith B Prins; Liesbeth Spruijt; C Marleen Kets; Nicoline Hoogerbrugge
Journal:  Fam Cancer       Date:  2013-12       Impact factor: 2.375

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