Journal article
Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease
American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics, Vol.147(3), p.320
0
04/05/2008
PMCID: PMC3645880
PMID: 17948904
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.
Details
- Title: Subtitle
- Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease
- Creators
- Elizabeth Penziner - Department of Psychiatry, University of Iowa, Iowa City, Iowa, USAJanet K Williams - University of Iowa, NursingCheryl ErwinYvonne BombardAnne WallisLeigh J BeglingerMichael R HaydenJane S Paulsen - University of Iowa, Psychiatry
- Resource Type
- Journal article
- Publication Details
- American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics, Vol.147(3), p.320
- Event
- 0
- Publisher
- United States
- PMID
- 17948904
- PMCID
- PMC3645880
- eISSN
- 1552-485X
- Grant note
- R01 NS040068 / NINDS NIH HHS Howard Hughes Medical Institute 1R01 HG00333001A1 / NHGRI NIH HHS 5R01 NS040068 / NINDS NIH HHS
- Language
- English
- Date published
- 04/05/2008
- Academic Unit
- Nursing
- Record Identifier
- 9983557616602771
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