title: Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease.
abstract: Potential discrimination from genetic testing may undermine technological advances for health care. Researching long-term consequences of testing for genetic conditions that may lead to discrimination is a public health priority. The consequences of genetic discrimination generate social, health, and economic burdens for society by diminishing opportunities for at-risk individuals in a range of contexts. The current study objective was to investigate perceptions of genetic stigmatization and discrimination among persons who completed predictive testing for Huntington's disease (HD). Using semi-structured interviews and computerized qualitative analysis, the perceptions of 15 presymptomatic persons with a positive gene test predicting HD were examined with regard to differential treatment following testing. The sample comprised 11 women and 4 men, mostly married (73%), aged between 22 and 62 years, with an average education of 14.6 years (SD +/- 2.57) and residing in urban, rural and suburban settings of eight U.S. States. Participants reported perceptions of consequences following disclosure of genetic test results in three areas: employment, insurance, and social relationships. Although most employed participants (90%) revealed their test results to their employers, nearly all reported they would not disclose this information to future employers. Most (87%) participants disclosed test results to their physician, but a similar majority (83%) did not tell their genetic status to insurers. Most participants (87%) disclosed test results to family and peers; patterns of disclosure varied widely. Discrimination concerns remain high in this sample and point to the need for more information to determine the extent and scope of the problem.
authors.affiliation: Department of Psychiatry, University of Iowa, Iowa City, Iowa, USA.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Penziner
authors.forename: Janet K
authors.initials: JK
authors.lastname: Williams
authors.forename: Cheryl
authors.initials: C
authors.lastname: Erwin
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Bombard
authors.forename: Anne
authors.initials: A
authors.lastname: Wallis
authors.forename: Leigh J
authors.initials: LJ
authors.lastname: Beglinger
authors.forename: Michael R
authors.initials: MR
authors.lastname: Hayden
authors.forename: Jane S
authors.initials: JS
authors.lastname: Paulsen
mesh_terms: D000328:Adult; D030881:Disclosure; D005260:Female; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis* / Q000235:genetics; D007343:Insurance Carriers; D007398:Interpersonal Relations; D016013:Likelihood Functions; D008297:Male; D008875:Middle Aged; D011287:Prejudice; D012938:Social Perception