Browse by author
Lookup NU author(s): Dr Lorraine Cowley
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
This paper explores what can be learned about the ethical thinking of families undergoing cancer genetic testing. It is based on a qualitative empirical project involving a distinct kinship group who were among the first internationally to be identified as having a genetic susceptibility to cancer. Thus they are a unique case study. 50 of the kinship group who were offered cancer genetic testing (42 had accepted and eight declined a genetic test) were invited to participate in qualitative interviews; 15 accepted the invitation and all of those had also accepted a genetic test. The study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent, and family members who declined testing were discussed negatively by participants. The paper addresses what is ethically problematic about the way that test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family members who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships.
Author(s): Cowley L
Publication type: Article
Publication status: Published
Journal: Bioethics
Year: 2016
Volume: 30
Issue: 8
Pages: 628-635
Print publication date: 01/10/2016
Online publication date: 15/08/2016
Acceptance date: 07/03/2016
Date deposited: 19/01/2017
ISSN (print): 0269-9702
ISSN (electronic): 1467-8519
Publisher: Wiley-Blackwell Publishing Ltd.
URL: http://dx.doi.org/10.1111/bioe.12272
DOI: 10.1111/bioe.12272
Altmetrics provided by Altmetric
