Document Detail


Acceptance of neonatal genetic screening for hereditary hemochromatosis by informed parents.
MedLine Citation:
PMID:  11960577     Owner:  NLM     Status:  MEDLINE    
Abstract/OtherAbstract:
The aim of this study was to assess attitudes to neonatal genetic screening for hereditary hemochromatosis. A total of 135 consecutive, pregnant women and their partners attending a hospital antenatal clinic in the Australian Capital Territory were given detailed written and verbal information about potential risks and benefits of neonatal genetic screening. Issues such as uncertainty of disease expression, confidentiality, genetic discrimination, and storage of genetic data were addressed. Attitudes were assessed by interview and questionnaire. There was a high level of acceptance for neonatal genetic screening in general (99%) and for hemochromatosis in particular (91.5%). There was no association of prior knowledge of hemochromatosis, family history of hemochromatosis, ethnicity, age, education, or occupation class with nonacceptance. Of the subjects, 39.5% reported feeling "a little anxious" about the prospect of screening their infants, although only 5.4% reported feeling "very anxious." Reasons given for nonacceptance of screening included inability of the child to give informed consent, insufficient evidence that diagnosis of hemochromatosis in childhood is beneficial, risk of discrimination on genetic grounds, lack of agreement between partners, and privacy issues. These data suggest that an Australian neonatal genetic screening program for hemochromatosis is likely to be accepted by this and similar groups of subjects, but there should be an opportunity for parents who object to screening to opt out of any such program.
Authors:
M Bassett; C Dunn; K Battese; M Peek
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Publication Detail:
Type:  Journal Article    
Journal Detail:
Title:  Genetic testing     Volume:  5     ISSN:  1090-6576     ISO Abbreviation:  Genet. Test.     Publication Date:  2001  
Date Detail:
Created Date:  2002-04-18     Completed Date:  2002-05-15     Revised Date:  2009-11-19    
Medline Journal Info:
Nlm Unique ID:  9802546     Medline TA:  Genet Test     Country:  United States    
Other Details:
Languages:  eng     Pagination:  317-20     Citation Subset:  E; IM    
Affiliation:
Gastroenterology Unit, The Canberra Hospital, Canberra Clinical School, University of Sydney, Australia. mark.bassett@act.gov.au
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MeSH Terms
Descriptor/Qualifier:
Adolescent
Adult
Australia
Child
Female
Genetic Testing / psychology*,  utilization
HLA Antigens / genetics
Hemochromatosis / congenital,  diagnosis,  genetics*
Histocompatibility Antigens Class I / genetics
Humans
Infant, Newborn
Male
Membrane Proteins*
Middle Aged
Neonatal Screening / psychology*,  utilization
Pregnancy
Questionnaires
Third-Party Consent*
Chemical
Reg. No./Substance:
0/HFE protein, human; 0/HLA Antigens; 0/Histocompatibility Antigens Class I; 0/Membrane Proteins

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