Literature DB >> 26194147

The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information.

Meaghann Weaver.   

Abstract

Genetic testing reveals information about a patient's health status and predictions about the patient's future wellness, while also potentially disclosing health information relevant to other family members. With the increasing availability and affordability of genetic testing and the integration of genetics into mainstream medicine, the importance of clarifying the scope of confidentiality and the rules regarding disclosure of genetic findings to genetic relatives is prime. The United Nations International Declaration on Human Genetic Data urges an appreciation for principles of equality, justice, solidarity and responsibility in the context of genetic testing, including a commitment to honoring the privacy and security of the person tested. Considering this global mandate and recent professional statements in the context of a legal amendment to patient privacy policies in Australia, a fresh scrutiny of the legal history of a physician's duty to warn is warranted. This article inquiries whether there may be anything ethically or socially amiss with a potential future recommendation for health professionals or patients to universally disclose particular cancer predisposition genetic diagnosis to genetic family members. While much of the discussion remains applicable to all genetic diagnosis, the article focuses on the practice of disclosure within the context of BRCA1/2 diagnosis. An 'ethic of care' interpretation of legal tradition and current practice will serve to reconcile law and medical policy on the issue of physician disclosure of genetic results to family members without patient consent.
© 2015 John Wiley & Sons Ltd.

Entities:  

Keywords:  confidentiality; duty to warn; ethic of care; genetic testing; privacy

Mesh:

Year:  2015        PMID: 26194147     DOI: 10.1111/bioe.12176

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  11 in total

1.  Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer: reactions and attitudes.

Authors:  Helle Vendel Petersen; Birgitte Lidegaard Frederiksen; Charlotte Kvist Lautrup; Lars Joachim Lindberg; Steen Ladelund; Mef Nilbert
Journal:  Fam Cancer       Date:  2019-01       Impact factor: 2.375

2.  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

Review 3.  Family-Specific Variants and the Limits of Human Genetics.

Authors:  Brian H Shirts; Colin C Pritchard; Tom Walsh
Journal:  Trends Mol Med       Date:  2016-10-11       Impact factor: 11.951

4.  "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

Authors:  Deborah R Gordon; Barbara A Koenig
Journal:  New Genet Soc       Date:  2021-12-13

5.  Clinician-Stakeholders' Perspectives on Using Patient Portals to Return Lynch Syndrome Screening Results.

Authors:  Diane M Korngiebel; Kathleen M West; Wylie Burke
Journal:  J Genet Couns       Date:  2017-11-21       Impact factor: 2.537

6.  Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.

Authors:  Deborah R Gordon; Carmen Radecki Breitkopf; Marguerite Robinson; Wesley O Petersen; Jason S Egginton; Kari G Chaffee; Gloria M Petersen; Susan M Wolf; Barbara A Koenig
Journal:  AJOB Empir Bioeth       Date:  2018-12-31

7.  Health Orientation, Knowledge, and Attitudes toward Genetic Testing and Personalized Genomic Services: Preliminary Data from an Italian Sample.

Authors:  Serena Oliveri; Marianna Masiero; Paola Arnaboldi; Ilaria Cutica; Chiara Fioretti; Gabriella Pravettoni
Journal:  Biomed Res Int       Date:  2016-12-25       Impact factor: 3.411

8.  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

9.  A tailored approach towards informing relatives at risk of inherited cardiac conditions: study protocol for a randomised controlled trial.

Authors:  Lieke M van den Heuvel; Yvonne M Hoedemaekers; Annette F Baas; J Peter van Tintelen; Ellen M A Smets; Imke Christiaans
Journal:  BMJ Open       Date:  2019-07-09       Impact factor: 2.692

10.  "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
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