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.

Personal Factors Associated with Reported Benefits of Huntington Disease Family History or Genetic Testing

“…Although perceptions of discrimination regarding insurance and social relationship (Penziner et al, 2008;Erwin et al, 2010) are shared across recent reports, other arenas in which discrimination is perceived to occur include health insurance (Oster et al, 2008), family (Bombard et al, 2009), and life insurance access (Barlow-Stewart et al, 2009). Other negative consequences may include depression, difficulties with transitions such as starting new relationships, planning a family, or coping with favorable test results (DudokdeWit et al, 1998;Tibben, 2007;Gargiulo et al, 2009).…”

Caregiving by Teens for Family Members With Huntington Disease

“…Adult family members who are caregivers report multiple aspects of emotional distress (Williams et al, 2009). Although research continues to identify effective treatment, there is currently no cure (Penziner et al, 2007). …”

Spontaneous disclosure of BRCA1/2 genetic test results to employers: a French prospective study

“…Genetic discrimination has been investigated and described in the context of Huntington's disease or other genetic diseases, and the types of discrimination unaffected carriers are liable to undergo in their lifetime, especially in the framework of insurance and at the workplace. [9][10][11][12] Transmission of medical information to employers has been reported to occur in 51% of patients with cystic fibrosis 13 and even in 76% of those with arthritis, 14 and further knowledge is required about the issues involved in to self-disclosure of conditions of this kind. The existence of a supportive occupational environment and supportive co-workers seems to be a key issue for these patients.…”