Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2010 Sep;153B(6):1150-9.
doi: 10.1002/ajmg.b.31080.

In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study

Janet K Williams  1 , Cheryl Erwin, Andrew R Juhl, Michelle Mengeling, Yvonne Bombard, Michael R Hayden, Kimberly Quaid, Ira Shoulson, Sandra Taylor, Jane S Paulsen; I-RESPOND-HD Investigators of the Huntington Study Group
Collaborators, Affiliations

In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study

Janet K Williams et al. Am J Med Genet B Neuropsychiatr Genet. 2010 Sep.

Abstract

Genetic discrimination may be experienced in the day-to-day lives of people at risk for Huntington disease (HD), encompassing occurrences in the workplace, when seeking insurance, within social relationships, and during other daily encounters. At-risk individuals who have tested either positive or negative for the genetic expansion that causes HD, as well as at-risk persons with a 50% chance for developing the disorder but have not had DNA testing completed the International RESPOND-HD (I-RESPOND-HD) survey. One of the study's purposes was to examine perceptions of genetic stigmatization and discrimination. A total of 412 out of 433 participants provided narrative comments, and 191 provided related codable narrative data. The core theme, Information Control, refers to organizational policies and interpersonal actions. This theme was found in narrative comments describing genetic discrimination perceptions across employment, insurance, social, and other situations. These reports were elaborated with five themes: What They Encountered, What They Felt, What Others Did, What They Did, and What Happened. Although many perceptions were coded as hurtful, this was not true in all instances. Findings document that reports of genetic discrimination are highly individual, and both policy as well as interpersonal factors contribute to the outcome of potentially discriminating events.

PubMed Disclaimer

References

    1. Barlow-Stewart K, Taylor SD, Treloar SA, Stranger M, Otlowski M. Verification of consumers’ experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. Genet Med. 2009;11(3):193–201. - PubMed
    1. Beglinger LJ, Paulsen JS, Watson DB, Wang C, Duff K, Langbehn DR, Moser DJ, Paulson HL, Aylward EH, Carlozzi NE, et al. Obsessive and compulsive symptoms in prediagnosed Huntington’s disease. J Clin Psychiatry. 2008;69(11):1758–1765. - PMC - PubMed
    1. Biser A. Genetic Information and Employment: A report on law in the United States. Cambridge: Council for Responsible Genetics; 2004. www.gene-watch.org.
    1. Bombard Y, Penziner E, Decolongon J, Klimek ML, Creighton S, Suchowersky O, Guttman M, Paulsen JS, Bottorff JL, Hayden MR. Managing genetic discrimination: strategies used by individuals found to have the Huntington disease mutation. Clin Genet. 2007;71(3):220–231. - PubMed
    1. Bombard Y, Penziner E, Suchowersky O, Guttman M, Paulsen JS, Bottorff JL, Hayden MR. Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. Eur J Hum Genet. 2008;16(3):279–289. - PMC - PubMed

Publication types