Literature DB >> 26482743

Genetic Test Results and Disclosure to Family Members: Qualitative Interviews of Healthcare Professionals' Perceptions of Ethical and Professional Issues in France.

Diane D' Audiffret Van Haecke1, Sandrine de Montgolfier2,3.   

Abstract

The benefit of disclosing test results to next of kin is to improve prognosis and-in some cases-even prevent death though earlier monitoring or preventive therapies. Research on this subject has explored the question of intra-familial communication from the standpoint of patients and relatives but rarely, from the standpoint of healthcare professionals. The purpose of this study was to interview relevant healthcare professionals in France, where legislation framing the issue was recently passed. A qualitative study consisting of semi-structured interviews was set up to get a clearer picture of the challenges arising from this issue, its consequences in terms of medical care-service practices, and the positions that frontline professionals have taken in response to this new legal framework. The findings from eight interviews with 7 clinical geneticists and 1 genetic counselor highlight very different patterns of practices among care services and among the genetic diseases involved. It is equally crucial to investigate other issues such as the nature of genetic testing and its consequences in terms of disclosing results to kin, the question of the role of genetic counseling in the disclosure process, the question of prescription by non-geneticist clinicians, and practical questions linked to information content, consent and medical follow-up for patients and their relatives.

Entities:  

Keywords:  At-risk relatives; Ethical issues; Family communication; Genetic counseling; Genetic results; Genetic testing; Responsibility

Mesh:

Year:  2015        PMID: 26482743     DOI: 10.1007/s10897-015-9896-7

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


  16 in total

Review 1.  Communicating genetic risk information within families: a review.

Authors:  Mel Wiseman; Caroline Dancyger; Susan Michie
Journal:  Fam Cancer       Date:  2010-12       Impact factor: 2.375

Review 2.  How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.

Authors:  Álvaro Mendes; Milena Paneque; Liliana Sousa; Angus Clarke; Jorge Sequeiros
Journal:  Eur J Hum Genet       Date:  2015-08-12       Impact factor: 4.246

3.  A comparative analysis of ethical and professional challenges experienced by Australian and U.S. genetic counselors.

Authors:  Sarah Alliman; Patricia McCarthy Veach; Dianne M Bartels; Fengqin Lian; Carolyn James; Bonnie S LeRoy
Journal:  J Genet Couns       Date:  2009-05-19       Impact factor: 2.537

4.  Ethical and professional challenges of genetic counseling - the case of Austria.

Authors:  Brigitte Gschmeidler; Magdalena Flatscher-Thoeni
Journal:  J Genet Couns       Date:  2013-06-01       Impact factor: 2.537

5.  Disclosing Genetic Information to Family Members About Inherited Cardiac Arrhythmias: An Obligation or a Choice?

Authors:  Rick D Vavolizza; Isha Kalia; Kathleen Erskine Aaron; Louise B Silverstein; Dorit Barlevy; David Wasserman; Christine Walsh; Robert W Marion; Siobhan M Dolan
Journal:  J Genet Couns       Date:  2014-11-18       Impact factor: 2.537

Review 6.  The Human Genome Project: under an international ethical microscope.

Authors:  B M Knoppers; R Chadwick
Journal:  Science       Date:  1994-09-30       Impact factor: 47.728

Review 7.  What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research.

Authors:  Kim Chivers Seymour; Julia Addington-Hall; Anneke M Lucassen; Claire L Foster
Journal:  J Genet Couns       Date:  2010-04-09       Impact factor: 2.537

8.  When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response.

Authors:  Angela R Bradbury; Linda Patrick-Miller; Brian L Egleston; Olufunmilayo I Olopade; Mary B Daly; Cynthia W Moore; Colleen B Sands; Helen Schmidheiser; Preethi K Kondamudi; Maia Feigon; Comfort N Ibe; Christopher K Daugherty
Journal:  Cancer       Date:  2012-01-09       Impact factor: 6.860

9.  Ethical and professional challenges posed by patients with genetic concerns: a report of focus group discussions with genetic counselors, physicians, and nurses.

Authors:  P M Veach; D M Bartels; B S LeRoy
Journal:  J Genet Couns       Date:  2001-04       Impact factor: 2.537

10.  A family genetic risk communication framework: guiding tool development in genetics health services.

Authors:  Miriam E Wiens; Brenda J Wilson; Christina Honeywell; Holly Etchegary
Journal:  J Community Genet       Date:  2013-01-15
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  11 in total

1.  Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics.

Authors:  Benjamin Derbez; Antoine de Pauw; Dominique Stoppa-Lyonnet; Sandrine de Montgolfier
Journal:  Fam Cancer       Date:  2017-07       Impact factor: 2.375

2.  The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer.

Authors:  Claire C Conley; Dana Ketcher; Maija Reblin; Monica L Kasting; Deborah Cragun; Jongphil Kim; Kimlin Tam Ashing; Cheryl L Knott; Chanita Hughes-Halbert; Tuya Pal; Susan T Vadaparampil
Journal:  J Genet Couns       Date:  2020-01-07       Impact factor: 2.537

3.  Genetic diseases and information to relatives: practical and ethical issues for professionals after introduction of a legal framework in France.

Authors:  Diane d'Audiffret Van Haecke; Sandrine de Montgolfier
Journal:  Eur J Hum Genet       Date:  2018-02-27       Impact factor: 4.246

4.  Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers.

Authors:  Marleah Dean; Ann L Tezak; Sabrina Johnson; Joy K Pierce; Anne Weidner; Kate Clouse; Tuya Pal; Deborah Cragun
Journal:  Patient Educ Couns       Date:  2021-01-05

5.  Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.

Authors:  Sandi Dheensa; Angela Fenwick; Anneke Lucassen
Journal:  BMJ Open       Date:  2017-02-03       Impact factor: 2.692

6.  The challenges of the expanded availability of genomic information: an agenda-setting paper.

Authors:  Pascal Borry; Heidi Beate Bentzen; Isabelle Budin-Ljøsne; Martina C Cornel; Heidi Carmen Howard; Oliver Feeney; Leigh Jackson; Deborah Mascalzoni; Álvaro Mendes; Borut Peterlin; Brigida Riso; Mahsa Shabani; Heather Skirton; Sigrid Sterckx; Danya Vears; Matthias Wjst; Heike Felzmann
Journal:  J Community Genet       Date:  2017-09-26

7.  Limitations and Pitfalls of Using Family Letters to Communicate Genetic Risk: a Qualitative Study with Patients and Healthcare Professionals.

Authors:  Sandi Dheensa; Anneke Lucassen; Angela Fenwick
Journal:  J Genet Couns       Date:  2017-11-01       Impact factor: 2.537

8.  "It would be so much easier": health system-led genetic risk notification-feasibility and acceptability of cascade screening in an integrated system.

Authors:  Nora B Henrikson; Paula R Blasi; Stephanie M Fullerton; Jane Grafton; Kathleen A Leppig; Gail P Jarvik; Eric B Larson
Journal:  J Community Genet       Date:  2019-03-06

9.  Disclosure of genetic information to family members: a systematic review of normative documents.

Authors:  Amicia Phillips; Pascal Borry; Ine Van Hoyweghen; Danya F Vears
Journal:  Genet Med       Date:  2021-07-07       Impact factor: 8.822

Review 10.  Privacy and confidentiality measures in genetic testing and counselling: arguing on genetic exceptionalism again?

Authors:  Magdalena M Witt; Michał P Witt
Journal:  J Appl Genet       Date:  2016-02-17       Impact factor: 3.240

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