title: Acceptance of neonatal genetic screening for hereditary hemochromatosis by informed parents.
abstract: 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.affiliation: Gastroenterology Unit, The Canberra Hospital, Canberra Clinical School, University of Sydney, Australia. mark.bassett@act.gov.au
authors.forename: M
authors.initials: M
authors.lastname: Bassett
authors.forename: C
authors.initials: C
authors.lastname: Dunn
authors.forename: K
authors.initials: K
authors.lastname: Battese
authors.forename: M
authors.initials: M
authors.lastname: Peek
mesh_terms: D000293:Adolescent; D000328:Adult; D001315:Australia; D002648:Child; D005260:Female; D005820:Genetic Testing / Q000523:psychology* / Q000706:statistics & numerical data; D006680:HLA Antigens / Q000235:genetics; D006432:Hemochromatosis / Q000151:congenital / Q000175:diagnosis / Q000235:genetics*; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I / Q000235:genetics; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D008565:Membrane Proteins; D008875:Middle Aged; D015997:Neonatal Screening / Q000523:psychology* / Q000706:statistics & numerical data; D011247:Pregnancy; D011795:Surveys and Questionnaires; D020458:Third-Party Consent
chemical_list: C103673:HFE protein, human; D006680:HLA Antigens; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I; D008565:Membrane Proteins