Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Medical Ethics 36 (7):391-395 (2010)
If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Knut Borch-Johnsen, Jørgen H. Olsen & Thorkild I. A. Sørensen (1994). Genes and Family Environment in Familial Clustering of Cancer. Theoretical Medicine and Bioethics 15 (4).
Graeme Suthers (2008). Privacy and Property Issues for a Familial Cancer Service. Journal of Bioethical Inquiry 5 (1):33-37.
Rebecca Dresser (2011). Bioethics and Cancer: When the Professional Becomes Personal. Hastings Center Report 41 (6):14-18.
Uwe Hartung, Sara Rubinelli & Peter J. Schulz (2011). “Your Risk is Low, Because …”: Argument-Driven Online Genetic Counselling. Argument and Computation 1 (3):199-214.
Frances M. Alexakos, Attitudes of Rhode Island Primary Care Physicians Toward the Use of Genetic Testing for Breast Cancer.
Stewart Justman (2012). Uninformed Consent: Mass Screening for Prostate Cancer. Bioethics 26 (3):143-148.
Catherine Dekeuwer & Simone Bateman (2013). Much More Than a Gene: Hereditary Breast and Ovarian Cancer, Reproductive Choices and Family Life. [REVIEW] Medicine, Health Care and Philosophy 16 (2):231-244.
A. J. Newson (2009). The Role of Patients in Clinical Ethics Support: A Snapshot of Practices and Attitudes in the United Kingdom. Clinical Ethics 4 (3):139-145.
Frances M. Alexakos (2003). Attitudes of Rhode Island Primary Care Physicians Toward the Use of Genetic Testing for Breast Cancer. Dissertation, Salve Regina University
H. E. M. van Luijn (2006). The Evaluation of the Risks and Benefits of Phase II Cancer Clinical Trials by Institutional Review Board (IRB) Members: A Case Study. Journal of Medical Ethics 32 (3):170-176.
Ilana Löwy (1994). Experimental Systems and Clinical Practices: Tumor Immunology and Cancer Immunotherapy, 1895-1980. [REVIEW] Journal of the History of Biology 27 (3):403 - 435.
F. A. Miller, R. Z. Hayeems, L. Li & J. P. Bytautas (2012). What Does 'Respect for Persons' Require? Attitudes and Reported Practices of Genetics Researchers in Informing Research Participants About Research. Journal of Medical Ethics 38 (1):48-52.
S. M. Madsen, S. Holm & P. Riis (2007). Attitudes Towards Clinical Research Among Cancer Trial Participants and Non-Participants: An Interview Study Using a Grounded Theory Approach. Journal of Medical Ethics 33 (4):234-240.
Marsha L. Richmond (2006). The 'Domestication' of Heredity: The Familial Organization of Geneticists at Cambridge University, 1895-1910. [REVIEW] Journal of the History of Biology 39 (3):565 - 605.
Added to index2010-09-13
Total downloads3 ( #303,708 of 1,099,791 )
Recent downloads (6 months)1 ( #303,541 of 1,099,791 )
How can I increase my downloads?