Disclosure of genetic information within families: a case report
Creator
Crawford, G.C.
Lucassen, A.M.
Bibliographic Citation
Clinical Ethics 2008 March; 3(1): 7-10
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.
Permanent Link
http://hdl.handle.net/10822/512690External Link
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Genetic professionals' reports of nondisclosure of genetic risk information within families
Clarke, Angus; Richards, Martin; Kerzin-Storrar, Lauren; Halliday, Jane; Young, Mary Anne; Simpson, Sheila A.; Featherstone, Katie; Forrest, Karen; Lucassen, Anneke; Morrison, Patrick J.; Quarrell, Oliver W.J.; Stewart, Helen (2005-05)