title: Perceptions regarding genetic testing in populations at risk for nephropathy.
abstract: BACKGROUND
  Population ancestry-based differences exist in genetic risk for many kidney diseases. Substantial debate remains regarding returning genetic test results to participants. African-Americans (AAs) and European-Americans (EAs) at risk for end-stage kidney disease were queried for views on the value and use of genetic testing in research.
  
  
  METHODS
  A standardized survey regarding attitudes toward genetic testing was administered to 130 individuals (64 AA, 66 EA) with first-degree relatives on dialysis. Fisher's exact test was used to assess differences in participant attitudes between population groups.
  
  
  RESULTS
  Mean (SD) age of surveyed AAs and EAs was 45.5 (12.8) and 50.5 (14.4) years, respectively (p = 0.04), with similar familial relationships (p = 0.22). AAs and EAs wished to know their test results if risk could be: (1) reduced by diet or exercise (100 and 98%, p = 0.99); (2) reduced by medical treatment (100 and 98%, p = 0.99), or (3) if no treatments were available (90 and 82%, p = 0.21). If informed they lacked a disease susceptibility variant, 87% of AAs and 88% of EAs would be extremely or pretty likely to inform family members (p = 0.84). If informed they had a disease susceptibility variant, 92% of AAs and 89% of EAs would be extremely or pretty likely to inform their family (p = 0.43).
  
  
  CONCLUSIONS
  Attitudes toward obtaining and using genetic test results for disease in research contexts were similar in AAs and EAs at risk for end-stage kidney disease. A substantial majority would want information regardless of available treatments and would share the information with the family. These results have important implications for patient care, study design and the informed consent process.
authors.affiliation: Department of Internal Medicine - Section on Nephrology, Wake Forest School of Medicine, Wake Forest University, Winston-Salem, N.C., USA.
authors.forename: Barry I
authors.initials: BI
authors.lastname: Freedman
authors.forename: Alison J
authors.initials: AJ
authors.lastname: Fletcher
authors.forename: Vivek R
authors.initials: VR
authors.lastname: Sanghani
authors.forename: Mitzie
authors.initials: M
authors.lastname: Spainhour
authors.forename: Angelina W
authors.initials: AW
authors.lastname: Graham
authors.forename: Gregory B
authors.initials: GB
authors.lastname: Russell
authors.forename: Jessica N
authors.initials: JN
authors.lastname: Cooke Bailey
authors.forename: Ana S
authors.initials: AS
authors.lastname: Iltis
authors.forename: Nancy M P
authors.initials: NM
authors.lastname: King
mesh_terms: D001741:Black or African American; D001294:Attitude to Health; D004032:Diet; D015444:Exercise; D005192:Family Health; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D007676:Kidney Failure, Chronic / Q000175:diagnosis* / Q000235:genetics*; D008297:Male; D010342:Patient Acceptance of Health Care; D006435:Renal Dialysis; D012306:Risk; D011795:Surveys and Questionnaires; D014481:United States; D044465:White People