Document Detail

Genetic professionals' reports of nondisclosure of genetic risk information within families.
MedLine Citation:
PMID:  15770225     Owner:  NLM     Status:  MEDLINE    
Patients attending genetic clinics are often the main gatekeepers of information for other family members. There has been much debate about the circumstances under which professionals may have an obligation, or may be permitted, to pass on personal genetic information about their clients but without their consent to other family members. We report findings from the first prospective study investigating the frequency with which genetics professionals become concerned about the failure of clients to pass on such information to their relatives. In all, 12 UK and two Australian regional genetic services reported such cases over 12 months, including details of actions taken by professionals in response to the clients' failure to disclose information. A total of 65 cases of non-disclosure were reported, representing <1% of the genetic clinic consultations in the collaborating centres during the study period. These included 39 cases of the failure of parents not passing full information to their adult offspring, 22 cases where siblings or other relatives were not given information and four cases where information was withheld from partners -- including former and prospective partners. Professionals reported clients' reasons for withholding information as complex, more often citing concern and the desire to shield relatives from distress rather than poor family relationships. In most cases, the professionals took further steps to persuade their clients to make a disclosure but in no instance did the professional force a disclosure without the client's consent.
Angus Clarke; Martin Richards; Lauren Kerzin-Storrar; Jane Halliday; Mary Anne Young; Sheila A Simpson; Katie Featherstone; Karen Forrest; Anneke Lucassen; Patrick J Morrison; Oliver W J Quarrell; Helen Stewart
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Publication Detail:
Type:  Journal Article; Multicenter Study; Research Support, Non-U.S. Gov't    
Journal Detail:
Title:  European journal of human genetics : EJHG     Volume:  13     ISSN:  1018-4813     ISO Abbreviation:  Eur. J. Hum. Genet.     Publication Date:  2005 May 
Date Detail:
Created Date:  2005-04-26     Completed Date:  2005-08-16     Revised Date:  2007-08-13    
Medline Journal Info:
Nlm Unique ID:  9302235     Medline TA:  Eur J Hum Genet     Country:  England    
Other Details:
Languages:  eng     Pagination:  556-62     Citation Subset:  IM    
Institute of Medical Genetics, University Hospital of Wales, Heath Park, Cardiff CF14 4XN, UK.
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MeSH Terms
Attitude of Health Personnel
Disclosure / ethics*,  standards*
Family Health*
Genetic Counseling / ethics*
Genetic Diseases, Inborn / genetics*,  psychology*
Genetics, Medical / ethics*
Great Britain
Prospective Studies
Risk Factors
Grant Support
//Wellcome Trust

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