Literature DB >> 20648056

Comparing family members' motivations and attitudes towards genetic testing for hereditary breast and ovarian cancer: a qualitative analysis.

Caroline Dancyger1, Jonathan A Smith, Chris Jacobs, Melissa Wallace, Susan Michie.   

Abstract

Genetic testing for hereditary breast and ovarian cancer reveals significant risk information regarding one's chances of developing cancer that has potential implications for patients and their families. This study reports on the motivations and attitudes of index patients and their relatives towards genetic testing for hereditary breast and ovarian cancer. In total, 10 female index patients and 20 of their relatives were interviewed regarding their experiences of communicating genetic information within their families, and their motivations and attitudes towards genetic testing. The analysis found two types of 'family groups': groups strongly committed to genetic testing and groups uncertain about testing. Within committed family groups, index patients and their relatives felt obliged to be tested for others, leading some relatives to be tested without having fully thought through their decision or the implications of knowing their mutation status. These family groups also described considerations in relation to the value of testing for themselves. In family groups uncertain about testing, relatives had not attended for predictive testing, had postponed decision making until some point in the future or had expressed ambivalence about the value of testing for themselves. Results suggest the value of explicitly acknowledging motivations for genetic testing within the context of family obligations, relationships and communication, and the possible value of involving family members in genetic counselling and decision making from a family's first contact with genetic services.

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Year:  2010        PMID: 20648056      PMCID: PMC3002862          DOI: 10.1038/ejhg.2010.114

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  17 in total

1.  Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information.

Authors:  N Hallowell; C Foster; R Eeles; A Ardern-Jones; V Murday; M Watson
Journal:  J Med Ethics       Date:  2003-04       Impact factor: 2.903

2.  Decision-making about inherited cancer risk: exploring dimensions of genetic responsibility.

Authors:  Holly Etchegary; Fiona Miller; Sonya deLaat; Brenda Wilson; June Carroll; Mario Cappelli
Journal:  J Genet Couns       Date:  2009-03-18       Impact factor: 2.537

3.  Genetic testing for breast and ovarian cancer predisposition: cancer burden and responsibility.

Authors:  Claire Foster; Maggie Watson; Clare Moynihan; Audrey Ardern-Jones; Rosalind Eeles
Journal:  J Health Psychol       Date:  2002-07

4.  Risk Perception and Decision-making Processes in Candidates for Genetic Testing for Huntington's Disease: An Interpretative Phenomenological Analysis.

Authors:  Jonathan A Smith; Susan Michie; Mike Stephenson; Oliver Quarrell
Journal:  J Health Psychol       Date:  2002-03

5.  Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients.

Authors:  Karin Landsbergen; Chris Verhaak; Floor Kraaimaat; Nicoline Hoogerbrugge
Journal:  Fam Cancer       Date:  2005       Impact factor: 2.375

6.  Genetic testing for hereditary breast and ovarian cancer: responsibility and choice.

Authors:  Lori d'Agincourt-Canning
Journal:  Qual Health Res       Date:  2006-01

7.  Guilt, blame and responsibility: men's understanding of their role in the transmission of BRCA1/2 mutations within their family.

Authors:  Nina Hallowell; Audrey Arden-Jones; Ros Eeles; Claire Foster; Anneke Lucassen; Clare Moynihan; Maggie Watson
Journal:  Sociol Health Illn       Date:  2006-11

8.  Non-uptake of predictive genetic testing for BRCA1/2 among relatives of known carriers: attributes, cancer worry, and barriers to testing in a multicenter clinical cohort.

Authors:  C Foster; D G R Evans; R Eeles; D Eccles; S Ashley; L Brooks; T Cole; J Cook; R Davidson; H Gregory; J Mackay; P J Morrison; M Watson
Journal:  Genet Test       Date:  2004

9.  Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations.

Authors:  Esme Finlay; Jill E Stopfer; Eric Burlingame; Katherine Goldfeder Evans; Katherine L Nathanson; Barbara L Weber; Katrina Armstrong; Timothy R Rebbeck; Susan M Domchek
Journal:  Genet Test       Date:  2008-03

10.  Life trajectories, genetic testing, and risk reduction decisions in 18-39 year old women at risk for hereditary breast and ovarian cancer.

Authors:  Rebekah Hamilton; Janet K Williams; Barbara J Bowers; Kathleen Calzone
Journal:  J Genet Couns       Date:  2008-11-01       Impact factor: 2.537

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  17 in total

1.  Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act.

Authors:  Dawn C Allain; Sue Friedman; Leigha Senter
Journal:  Fam Cancer       Date:  2012-12       Impact factor: 2.375

2.  Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.

Authors:  Anne L Ersig; Allison Werner-Lin; Lindsey Hoskins; Jennifer Young; Jennifer T Loud; June Peters; Mark H Greene
Journal:  J Fam Nurs       Date:  2018-12-12       Impact factor: 3.818

3.  Timing and context: important considerations in the return of genetic results to research participants.

Authors:  Kate A McBride; Nina Hallowell; Martin H N Tattersall; Judy Kirk; Mandy L Ballinger; David M Thomas; Gillian Mitchell; Mary-Anne Young
Journal:  J Community Genet       Date:  2015-05-26

4.  What men want: Qualitative analysis of what men with prostate cancer (PCa) want to learn regarding genetic referral, counseling, and testing.

Authors:  Samantha Greenberg; Stacey Slager; Brock O' Neil; Kathleen Cooney; Benjamin Maughan; Nicole Stopa; Vickie Venne; Susan Zickmund; Sarah Colonna
Journal:  Prostate       Date:  2020-02-06       Impact factor: 4.104

5.  Psychological adaptation to diagnostic genomic sequencing results: The role of hope fulfillment.

Authors:  Ida Griesemer; Elizabeth Moore; Cynthia Khan; Myra Roche; Gail Henderson; Christine Rini
Journal:  Health Psychol       Date:  2019-04-08       Impact factor: 4.267

6.  Development of the Informing Relatives Inventory (IRI): Assessing Index Patients' Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives.

Authors:  Eveline de Geus; Cora M Aalfs; Fred H Menko; Rolf H Sijmons; Mathilde G E Verdam; Hanneke C J M de Haes; Ellen M A Smets
Journal:  Int J Behav Med       Date:  2015-08

7.  A grounded explanation of why women present with advanced breast cancer.

Authors:  Nur Aishah Taib; Cheng Har Yip; Wah Yun Low
Journal:  World J Surg       Date:  2014-07       Impact factor: 3.352

8.  How can psychological science inform research about genetic counseling for clinical genomic sequencing?

Authors:  Cynthia M Khan; Christine Rini; Barbara A Bernhardt; J Scott Roberts; Kurt D Christensen; James P Evans; Kyle B Brothers; Myra I Roche; Jonathan S Berg; Gail E Henderson
Journal:  J Genet Couns       Date:  2014-12-09       Impact factor: 2.537

9.  The personal experience of parenting a child with juvenile Huntington's disease: perceptions across Europe.

Authors:  Virginia Eatough; Helen Santini; Christine Eiser; Marie-Louise Goller; Wioletta Krysa; 'Annunziata' de Nicola; Matteo Paduanello; Martina Petrollini; Maria Rakowicz; Ferdinando Squitieri; Aad Tibben; Katie Lee Weille; Bernhard Landwehrmeyer; Oliver Quarrell; Jonathan A Smith
Journal:  Eur J Hum Genet       Date:  2013-02-27       Impact factor: 4.246

10.  Support Seeking or Familial Obligation: An Investigation of Motives for Disclosing Genetic Test Results.

Authors:  Marisa Greenberg; Rachel A Smith
Journal:  Health Commun       Date:  2015-10-27
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