Literature DB >> 16528614

Guidelines for disclosing genetic information to family members: from development to use.

Béatrice Godard1, Thierry Hurlimann, Martin Letendre, Nathalie Egalité.   

Abstract

This paper presents the existing legal frameworks, professional guidelines and other documents related to the conditions and extent of the disclosure of genetic information by physicians to at-risk family members. Although the duty of a physician regarding disclosure of genetic information to a patient's relatives has only been addressed by few legal cases, courts have found such a duty under some circumstances. Generally, disclosure should not be permitted without the patient's consent. Yet, due to the nature of genetic information, exceptions are foreseen, where treatment and prevention are available. This duty to warn a patient's relative is also supported by some professional and policy organizations that have addressed the issue. Practice guidelines with a communication and intervention plan are emerging, providing physicians with tools that allow them to assist patients in their communication with relatives without jeopardizing their professional liability. Since guidelines aim to improve the appropriateness of medical practice and consequently to better serve the interests of patients, it is important to determine to what degree they document the 'best practice' standards. Such an analysis is an essential step to evaluate the different approaches permitting the disclosure of genetic information to family members.

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Year:  2006        PMID: 16528614     DOI: 10.1007/s10689-005-2581-5

Source DB:  PubMed          Journal:  Fam Cancer        ISSN: 1389-9600            Impact factor:   2.375


  41 in total

1.  Communicating genetic test results to the family: a six-step, skills-building strategy.

Authors:  M B Daly; A Barsevick; S M Miller; R Buckman; J Costalas; S Montgomery; R Bingler
Journal:  Fam Community Health       Date:  2001-10

2.  Guidelines for genetic testing. The Japan Society of Human Genetics, Council Committee of Ethics.

Authors:  I Matsuda; N Niikawa; K Sato; K Suzumori; Y Fukushima; N Fujiki; I Kanazawa; Y Nakamura; S Yonemoto; Y Nakagome
Journal:  J Hum Genet       Date:  2001       Impact factor: 3.172

3.  Genomic torts: the law of the future -- the duty of physicians to disclose the presence of a genetic disease to the relatives of their patients with the disease.

Authors:  L J Deftos
Journal:  Univ San Francisco Law Rev       Date:  1997

4.  Genetic testing and screening: the developing European jurisprudence.

Authors:  Tony McGleenan
Journal:  Hum Reprod Genet Ethics       Date:  1999

5.  In defence of ignorance: genetic information and the right not to know.

Authors:  Graeme T Laurie
Journal:  Eur J Health Law       Date:  1999-06

6.  Genetic secrets and the family.

Authors:  D Bell; B Bennett
Journal:  Med Law Rev       Date:  2001       Impact factor: 1.267

7.  Familial disclosure in defiance of nonconsent.

Authors:  J F Merz; M K Cho; P Sankar
Journal:  Am J Hum Genet       Date:  1998-09       Impact factor: 11.025

8.  Response of the law to developments in genetics.

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Journal:  Med Law       Date:  1995

9.  Transmitting genetic risk information in families: attitudes about disclosing the identity of relatives.

Authors:  J T Wilcke; N Seersholm; A Kok-Jensen; A Dirksen
Journal:  Am J Hum Genet       Date:  1999-09       Impact factor: 11.025

10.  American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility.

Authors: 
Journal:  J Clin Oncol       Date:  2003-04-11       Impact factor: 44.544

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  31 in total

1.  An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations.

Authors:  Paboda Ratnayake; Claire E Wakefield; Bettina Meiser; Graeme Suthers; Melanie A Price; Jessica Duffy; Kathy Tucker
Journal:  Fam Cancer       Date:  2011-03       Impact factor: 2.375

2.  Should physicians warn patients' relatives of genetic risks?

Authors:  Mireille Lacroix; Gillian Nycum; Béatrice Godard; Bartha Maria Knoppers
Journal:  CMAJ       Date:  2008-02-26       Impact factor: 8.262

Review 3.  Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information.

Authors:  Gillian Nycum; Denise Avard; Bartha M Knoppers
Journal:  Eur J Hum Genet       Date:  2009-03-25       Impact factor: 4.246

4.  Five skills psychiatrists should have in order to provide patients with optimal ethical care.

Authors:  Edmund Howe
Journal:  Innov Clin Neurosci       Date:  2011-03

5.  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

6.  My Identical Twin Sequenced our Genome.

Authors:  Samantha L P Schilit; Arielle Schilit Nitenson
Journal:  J Genet Couns       Date:  2016-11-16       Impact factor: 2.537

7.  The uptake of presymptomatic genetic testing in hereditary breast-ovarian cancer and Lynch syndrome: a systematic review of the literature and implications for clinical practice.

Authors:  Fred H Menko; Jacqueline A Ter Stege; Lizet E van der Kolk; Kiki N Jeanson; Winnie Schats; Daoud Ait Moha; Eveline M A Bleiker
Journal:  Fam Cancer       Date:  2019-01       Impact factor: 2.375

8.  Families' experience of oncogenetic counselling: accounts from a heterogeneous hereditary cancer risk population.

Authors:  Álvaro Mendes; Liliana Sousa
Journal:  Fam Cancer       Date:  2012-06       Impact factor: 2.375

9.  Breast Cancer Survivors' Knowledge of Hereditary Breast and Ovarian Cancer following Genetic Counseling: An Exploration of General and Survivor-Specific Knowledge Items.

Authors:  Courtney L Scherr; Juliette Christie; Susan T Vadaparampil
Journal:  Public Health Genomics       Date:  2015-09-22       Impact factor: 2.000

10.  Evaluating the utilization of educational materials in communicating about Lynch syndrome to at-risk relatives.

Authors:  Kristen Dilzell; Kerry Kingham; Kelly Ormond; Uri Ladabaum
Journal:  Fam Cancer       Date:  2014-09       Impact factor: 2.375

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