Literature DB >> 30919323

Evaluation of the template letter regarding the disclosure of genetic information within the family in France.

Cécile Zordan1, Laetitia Monteil2, Emmanuelle Haquet3, Christophe Cordier4, Eva Toussaint5, Pauline Roche5, Virginie Dorian5, Aline Maillard6, Edouard Lhomme6, Laura Richert6, Laurent Pasquier7, Linda Akloul7, Nicolas Taris8, Didier Lacombe5,9.   

Abstract

The 2011 French Bioethics Law regarding disclosure of genetic information within families enables health professionals to notify any at-risk relatives directly, with the patient's consent, using a template letter. To assess the impact of this template letter in terms of understanding, personal feelings and intent to contact a health professional, we conducted a study interviewing patients, members of the public and genetic professionals. Although the main response to the letter was anxiety, this was associated with good understanding of the content and most individuals mentioned intention to contact a health professional.

Entities:  

Keywords:  Ethical issues; Family communication; Genetic counselling; Genetic information disclosure; Responsibility; Template letter

Year:  2019        PMID： 30919323      PMCID： PMC6754521          DOI： 10.1007/s12687-019-00418-7

Source DB:  PubMed          Journal:  J Community Genet        ISSN： 1868-310X


  19 in total

1.  Comparison of genetic services with and without genetic registers: access and attitudes to genetic counselling services among relatives of genetic clinic patients.

Authors:  L Kerzin-Storrar; C Wright; P R Williamson; A Fryer; A Njindou; O Quarrell; D Donnai; D Craufurd
Journal:  J Med Genet       Date:  2002-12       Impact factor: 6.318

Review 2.  Communicating genetic information in families--a review of guidelines and position papers.

Authors:  Laura E Forrest; Martin B Delatycki; Loane Skene; MaryAnne Aitken
Journal:  Eur J Hum Genet       Date:  2007-03-28       Impact factor: 4.246

3.  Impact of genetic risk information and type of disease on perceived risk, anticipated affect, and expected consequences of genetic tests.

Authors:  Linda D Cameron; Kerry A Sherman; Theresa M Marteau; Paul M Brown
Journal:  Health Psychol       Date:  2009-05       Impact factor: 4.267

4.  ASHG statement. Professional disclosure of familial genetic information. The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure.

Authors: 
Journal:  Am J Hum Genet       Date:  1998-02       Impact factor: 11.025

5.  Communication of Information about Genetic Risks: Putting Families at the Center.

Authors:  Álvaro Mendes; Alison Metcalfe; Milena Paneque; Liliana Sousa; Angus J Clarke; Jorge Sequeiros
Journal:  Fam Process       Date:  2017-07-16

6.  Comparison of genetic services with and without genetic registers: knowledge, adjustment, and attitudes about genetic counselling among probands referred to three genetic clinics.

Authors:  C Wright; L Kerzin-Storrar; P R Williamson; A Fryer; A Njindou; O Quarrell; D Donnai; D Craufurd
Journal:  J Med Genet       Date:  2002-12       Impact factor: 6.318

7.  Communicating risk information in genetic counseling: an observational study.

Authors:  Susan Michie; Kathryn Lester; Julia Pinto; Theresa M Marteau
Journal:  Health Educ Behav       Date:  2005-10

8.  To tell or not to tell: barriers and facilitators in family communication about genetic risk.

Authors:  K Forrest; S A Simpson; B J Wilson; E R van Teijlingen; L McKee; N Haites; E Matthews
Journal:  Clin Genet       Date:  2003-10       Impact factor: 4.438

9.  Improved health perception after genetic counselling for women at high risk of breast and/or ovarian cancer: construction of new questionnaires--an Italian exploratory study.

Authors:  Chiara Catania; Irene Feroce; Monica Barile; Aron Goldhirsch; Tommaso De Pas; Filippo de Braud; Sabrina Boselli; Laura Adamoli; Davide Radice; Alessandra Rossi; Gianluca Spitaleri; Cristina Noberasco; Bernardo Bonanni
Journal:  J Cancer Res Clin Oncol       Date:  2015-11-17       Impact factor: 4.553

10.  Increased genetic counseling support improves communication of genetic information in families.

Authors:  Laura E Forrest; Jo Burke; Sonya Bacic; David J Amor
Journal:  Genet Med       Date:  2008-03       Impact factor: 8.822
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  3 in total

1.  Disclosure to genetic relatives without consent - Australian genetic professionals' awareness of the health privacy law.

Authors:  Natalia Meggiolaro; Kristine Barlow-Stewart; Kate Dunlop; Ainsley J Newson; Jane Fleming
Journal:  BMC Med Ethics       Date:  2020-02-04       Impact factor: 2.652

2.  Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden.

Authors:  Andreas Andersson; Carolina Hawranek; Anna Öfverholm; Hans Ehrencrona; Kalle Grill; Senada Hajdarevic; Beatrice Melin; Emma Tham; Barbro Numan Hellquist; Anna Rosén
Journal:  Hered Cancer Clin Pract       Date:  2020-09-15       Impact factor: 2.857

3.  Healthcare professionals' responsibility for informing relatives at risk of hereditary disease.

Authors:  Kalle Grill; Anna Rosén
Journal:  J Med Ethics       Date:  2020-11-27       Impact factor: 2.903
  3 in total

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