title: Psychosocial impact of genetic testing for hemochromatosis in the HEIRS Study: a comparison of participants recruited in Canada and in the United States.
abstract: The Hemochromatosis and Iron Overload Screening (HEIRS) Study screened 101,168 participants recruited from primary-care clinics in Canada and the United States. The present study investigated differences in the psychological effects of genetic screening for hemochromatosis (HFE mutation analysis) in participants from each country. Study participants comprised a subset of 2,654 individuals who donated blood for HFE mutation analysis. The initial screening and 1-month post-result questionnaires included measures of General Health, Mental Health (SF-36), and a measure of the percentage of individuals who experienced at least one example of worry in response to the genetic testing. Participants reported similar changes in general health and mental health, regardless of mutation result, or country. Although a significantly lower percentage of Canadian participants than U.S. participants indicated at least one negative emotional response to the genetic testing, greater than 50% of C282Y homozygote participants (the gene mutation most strongly associated with hemochromatosis) from both countries experienced such in response to testing. Thus, although not serious enough to affect individuals' mental or physical health, there was evidence of at least one element of negative emotional response to the genetic testing. These findings suggest that population screening for common HFE mutations associated with hemochromatosis risk has similar psychological effects on Canadian and U.S. individuals, although fewer Canadians may experience a negative response to such testing.
authors: London (Ontario) Health Sciences Center, London, Ontario, Canada. tara.power@calgaryhealthregion.ca
authors: Tara E
authors: TE
authors: Power
authors: Paul C
authors: PC
authors: Adams
authors: James C
authors: JC
authors: Barton
authors: Ronald T
authors: RT
authors: Acton
authors: Edmund
authors: E
authors: Howe
authors: Shana
authors: S
authors: Palla
authors: Ann P
authors: AP
authors: Walker
authors: Roger
authors: R
authors: Anderson
authors: Barbara
authors: B
authors: Harrison
mesh_terms: D002170:Canada; D005820:Genetic Testing / Q000523:psychology*; D006432:Hemochromatosis / Q000235:genetics*; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I / Q000235:genetics; D006801:Humans; D008565:Membrane Proteins / Q000235:genetics; D011795:Surveys and Questionnaires; D014481:United States
chemical_list: C103673:HFE protein, human; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I; D008565:Membrane Proteins