Literature DB >> 20835758

The development of a methodology for examining the process of family communication of genetic test results.

Jonathan A Smith1, Caroline Dancyger, Melissa Wallace, Chris Jacobs, Susan Michie.   

Abstract

It is important to study communication processes in families where members are undergoing testing for genetic conditions because the information received from such testing is crucial not just to the individual concerned but also to other members of the biological family. This topic has received little research attention, in part because of the complexities of methodology required. In this paper we present the development of a method specifically designed for the examination of the content and process of communication of genetic information in families. The method aims to maximize ecological validity as far as is possible. We describe how participants and other family members are recruited and how data were collected. We outline three main data analytic strategies: a graphic to show how genetic information changes as it flows from clinic and through the family, an intensive qualitative analysis of the meaning and impact of the genetic information to different family members, and an informative genogram which plots key family dynamics. This method will be illustrated in relation to a study of ten family-groups where one individual has been found to carry a genetic mutation predisposing them to hereditary breast and ovarian cancer.

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Year:  2010        PMID: 20835758     DOI: 10.1007/s10897-010-9317-x

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


  15 in total

Review 1.  Family communication about genetic risk: the little that is known.

Authors:  Brenda J Wilson; Karen Forrest; Edwin R van Teijlingen; Lorna McKee; Neva Haites; Eric Matthews; Sheila A Simpson
Journal:  Community Genet       Date:  2004

2.  Disclosing genetic test results to family members.

Authors:  Rebekah J Hamilton; Barbara J Bowers; Janet K Williams
Journal:  J Nurs Scholarsh       Date:  2005       Impact factor: 3.176

3.  Health first, genetics second: exploring families' experiences of communicating genetic information.

Authors:  Laura E Forrest; Lisette Curnow; Martin B Delatycki; Loane Skene; Maryanne Aitken
Journal:  Eur J Hum Genet       Date:  2008-05-21       Impact factor: 4.246

4.  Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.

Authors:  Erna Claes; Gerry Evers-Kiebooms; Andrea Boogaerts; Marleen Decruyenaere; Lieve Denayer; Eric Legius
Journal:  Am J Med Genet A       Date:  2003-01-01       Impact factor: 2.802

5.  Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program's experience.

Authors:  Josephine Wagner Costalas; Mark Itzen; John Malick; James S Babb; Betsy Bove; Andrew K Godwin; Mary B Daly
Journal:  Am J Med Genet C Semin Med Genet       Date:  2003-05-15       Impact factor: 3.908

6.  The personal experience of juvenile Huntington's disease: an interpretative phenomenological analysis of parents' accounts of the primary features of a rare genetic condition.

Authors:  J A Smith; H M Brewer; V Eatough; C A Stanley; N W Glendinning; O W J Quarrell
Journal:  Clin Genet       Date:  2006-06       Impact factor: 4.438

7.  Experiences of genetic risk: disclosure and the gendering of responsibility.

Authors:  L d'Agincourt-Canning
Journal:  Bioethics       Date:  2001-06       Impact factor: 1.898

8.  Understanding why negative genetic test results sometimes fail to reassure.

Authors:  Susan Michie; Jonathan A Smith; Victoria Senior; Theresa M Marteau
Journal:  Am J Med Genet A       Date:  2003-06-15       Impact factor: 2.802

9.  The phases of disclosing BRCA1/2 genetic information to offspring.

Authors:  Susan Clarke; Kate Butler; Mary Jane Esplen
Journal:  Psychooncology       Date:  2008-08       Impact factor: 3.894

10.  Genetic analysis of breast cancer in the cancer and steroid hormone study.

Authors:  E B Claus; N Risch; W D Thompson
Journal:  Am J Hum Genet       Date:  1991-02       Impact factor: 11.025

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  5 in total

1.  Family communication following BRCA1/2 genetic testing: a close look at the process.

Authors:  Darquise Lafrenière; Karine Bouchard; Béatrice Godard; Jacques Simard; Michel Dorval
Journal:  J Genet Couns       Date:  2012-12-16       Impact factor: 2.537

2.  Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families.

Authors:  Peter James B Abad; Cora A Anonuevo; Sandra Daack-Hirsch; Lorna R Abad; Carmencita D Padilla; Mercy Y Laurino
Journal:  J Genet Couns       Date:  2016-11-10       Impact factor: 2.537

3.  Prevalence and correlates of receiving and sharing high-penetrance cancer genetic test results: findings from the Health Information National Trends Survey.

Authors:  Jennifer M Taber; Christine Q Chang; Tram K Lam; Elizabeth M Gillanders; Jada G Hamilton; Sheri D Schully
Journal:  Public Health Genomics       Date:  2015       Impact factor: 2.000

4.  Communicating with Daughters About Familial Risk of Breast Cancer: Individual, Family, and Provider Influences on Women's Knowledge of Cancer Risk.

Authors:  Lucy A Peipins; Juan L Rodriguez; Nikki A Hawkins; Ashwini Soman; Mary C White; M Elizabeth Hodgson; Lisa A DeRoo; Dale P Sandler
Journal:  J Womens Health (Larchmt)       Date:  2018-01-29       Impact factor: 2.681

5.  Accuracy of recall of information about a cancer-predisposing BRCA1/2 gene mutation among patients and relatives.

Authors:  Chris Jacobs; Caroline Dancyger; Jonathan A Smith; Susan Michie
Journal:  Eur J Hum Genet       Date:  2014-05-21       Impact factor: 4.246

  5 in total

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