title: Psychosocial aspects of DNA testing for hereditary hemochromatosis in at-risk individuals: a systematic review.
abstract: OBJECTIVE
  To review the psychosocial benefits and harms of DNA testing for HFE-related hereditary hemochromatosis (HH) in at-risk individuals.
  
  
  BACKGROUND
  HH is a common genetic disease in people of European descent. DNA-based predisposition testing is used for diagnosis or in the context of family testing, but there are concerns about potential psychosocial consequences.
  
  
  METHODS
  Fifteen electronic databases (including Medline and Cochrane) were searched from inception to April 2007 to identify any quantitative or qualitative primary research that considered DNA testing of individuals considered at-risk of HH and reported psychosocial outcomes. Inclusion criteria, data extraction, and quality assessment were undertaken by standard methodology.
  
  
  RESULTS
  Three observational studies met the inclusion criteria of the review; each had methodological limitations. On receipt of test results, anxiety levels fell or were unchanged; general health-related quality-of-life outcomes improved in some aspects, or were unchanged with respect to pretest result values. Outcomes were not reported separately for those referred for diagnosis and those with family history of HH. Results suggest that genetic testing for HH in at-risk individuals is accompanied by few negative psychosocial outcomes.
  
  
  CONCLUSIONS
  The evidence on the psychosocial aspects of DNA testing for HH in at-risk individuals is limited. Further research might be required if other factors influencing the natural history of the disease phenotype are identified.
authors.affiliation: Southampton Health Technology Assessments Centre, University of Southampton, Southampton, United Kingdom. j.picot@soton.ac.uk
authors.forename: Joanna
authors.initials: J
authors.lastname: Picot
authors.forename: Jackie
authors.initials: J
authors.lastname: Bryant
authors.forename: Keith
authors.initials: K
authors.lastname: Cooper
authors.forename: Andy
authors.initials: A
authors.lastname: Clegg
authors.forename: Paul
authors.initials: P
authors.lastname: Roderick
authors.forename: William
authors.initials: W
authors.lastname: Rosenberg
authors.forename: Christine
authors.initials: C
authors.lastname: Patch
mesh_terms: D001007:Anxiety; D004247:DNA / Q000235:genetics; D004252:DNA Mutational Analysis / Q000523:psychology*; D016208:Databases, Factual; D004644:Emotions; D005260:Female; D005820:Genetic Testing / Q000523:psychology*; D006432:Hemochromatosis / Q000175:diagnosis / Q000235:genetics* / Q000523:psychology*; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I / Q000235:genetics; D006801:Humans; D008297:Male; D008565:Membrane Proteins / Q000235:genetics; D011584:Psychology; D012107:Research Design; D012307:Risk Factors
chemical_list: C103673:HFE protein, human; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I; D008565:Membrane Proteins; D004247:DNA