Disclosure of genetic information within families: a case report
Disclosure of genetic information within families: a case report
There has been much discussion about what, if any, legal and moral duties professionals have to disclose relevant genetic information to the family members of someone with an identified disease predisposing mutation. Here, we present a case report where dissemination of such a genetic test result did not take place within a family. In contrast to previous literature, there appeared to be no deliberate withholding of information, instead distant relatives were unable to communicate relevant information appropriately. When communication was facilitated through the follow-up of a chance remark, the patient was able to avoid planned major surgery, with its attendant morbidity, and her high anxiety levels were much reduced. We believe this case highlights the need for an ongoing debate on how genetic services can best support patients and their families with disclosing relevant genetic information to other family members
7-10
Crawford, G.C.
c49ec103-2936-4897-8f25-96abe25b3a9f
Lucassen, A.M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
March 2008
Crawford, G.C.
c49ec103-2936-4897-8f25-96abe25b3a9f
Lucassen, A.M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Crawford, G.C. and Lucassen, A.M.
(2008)
Disclosure of genetic information within families: a case report.
Clinical Ethics, 3 (1), .
(doi:10.1258/ce.2007.007051).
Abstract
There has been much discussion about what, if any, legal and moral duties professionals have to disclose relevant genetic information to the family members of someone with an identified disease predisposing mutation. Here, we present a case report where dissemination of such a genetic test result did not take place within a family. In contrast to previous literature, there appeared to be no deliberate withholding of information, instead distant relatives were unable to communicate relevant information appropriately. When communication was facilitated through the follow-up of a chance remark, the patient was able to avoid planned major surgery, with its attendant morbidity, and her high anxiety levels were much reduced. We believe this case highlights the need for an ongoing debate on how genetic services can best support patients and their families with disclosing relevant genetic information to other family members
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Published date: March 2008
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Local EPrints ID: 181269
URI: http://eprints.soton.ac.uk/id/eprint/181269
ISSN: 1477-7509
PURE UUID: 3c32763c-d86b-49f5-bc1a-368f09ff411c
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Date deposited: 14 Apr 2011 08:39
Last modified: 15 Mar 2024 03:11
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