Navigation Links
People With Huntington's Report Discrimination

Businesses, the public, even families are involved, study finds

FRIDAY, June 12 (HealthDay News) -- As if having a family history of an incurable genetic disease isn't worry enough, people with a family history of Huntington's disease report being discriminated against by insurance companies, relatives and in social settings, according to a new study.

Yvonne Bombard and colleagues at the University of British Columbia surveyed 233 people in Canada who were at risk of developing Huntington's disease, a degenerative disorder that leads to involuntary movements, personality changes, psychiatric issues and loss of intellectual functioning.

People with Huntington's disease usually begin to show symptoms in midlife and die 15 to 20 years after diagnosis. There are no treatments to slow the disease, the researchers noted in their report, published in the June 10 issue of BMJ.

At the time of the study, none of the participants had symptoms of the disease. Before the study, 167 had been tested to determine if they carried the Huntington's disease gene mutation; 83 had it and 84 did not. The remaining 66 chose not to be tested.

Nearly 40 percent of the study participants reported some form of discrimination, the authors found. About 30 percent said it came from insurance companies, usually in the form of rejections by life or disability companies, higher premiums or requests to take a predictive test.

Discrimination came from family members about 15 percent of the time, and about 12 percent said they'd been discriminated against in a social setting, usually over their choice to have children or to enter into a relationship, the researchers noted.

Huntington's is a familial disease, passed from parent to child through a gene mutation. A child of someone with Huntington's has a 50-50 chance of inheriting the gene, according to the U.S. National Institute of Neurological Disorders and Stroke.

The researchers also reported that about 7 percent of the study participants said they'd faced discrimination in employment, nearly 9 percent said they felt it in a health-care setting and about 4 percent said they had been discriminated against in a public setting.

Family members who already knew they carried the mutation reported the highest levels of discrimination, although getting the genetic testing was not associated with more discrimination, the study noted.

Those who had experienced discrimination reported psychological distress because of it.

Despite advances in genetic testing, fear of discrimination has prevented some from having the testing done or participating in genetic research, the authors explained.

Given that much of the discrimination seems to come from within the family, "clearly, there is a need to shift the current focus of genetic discrimination as a genetic testing issue to one that equally highlights the role that family history plays in people's lives," Bombard and her colleagues wrote.

In May 2008, the U.S. Congress passed the Genetic Information Nondiscrimination Act to prevent the use of genetic information by health insurance companies or employers.

An accompanying editorial by Aad Tibben of Leiden University in the Netherlands discusses the benefits of genetic testing, saying it "gives a person at risk the opportunity to take more responsibility and control over their life, their health and their future."

"In general, the test brings relief from uncertainty and more control over people's future life, and no serious adverse consequences have been reported," Tibben wrote.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about Huntington's disease.

-- Jennifer Thomas

SOURCE: BMJ, news release, June 10, 2009

Copyright©2009 ScoutNews,LLC.
All rights reserved  

Related medicine news :

1. UCLA researchers identify markers that may predict diabetes in still-healthy people
2. Are too many people diagnosed as depressed?
3. Bipolar Diagnoses in Younger People Show Huge Increase
4. Preparation for Natural Disasters Critical for People With Diabetes, Chronic Medical Conditions
5. Drug-free treatments offer hope for older people in pain
6. Wanting a bite of everything: Hungry people crave more variety
7. Academy releases emergency preparedness tools to enable millions more people to shelter in place
8. Different HIV rates among gay men and straight people not fully explained by sexual behavior
9. Peoples United Financial CEO Has Surgery
10. The American Pain Foundation (APF) and The HealthCentral Network Collaborate to Develop Enhanced Internet Resources for People with Pain
11. Major differences revealed in how local authorities in the UK support disabled people
Post Your Comments:
Related Image:
People With Huntington's Report Discrimination
(Date:11/24/2015)... , ... November 24, 2015 , ... DMG Productions announced ... Begley Jr., airing first quarter 2016 via Discovery Channel. Dates and show times TBA. ... Province, and is in the business of producing and supplying medical marijuana pursuant to ...
(Date:11/24/2015)... ... November 24, 2015 , ... Preparing for the LDT Regulation:, CLIA Won’t ... , FDA has long asserted that design and manufacture of Laboratory ... tests and do not meet the device regulations. , Come up short in an ...
(Date:11/24/2015)... ... November 24, 2015 , ... The ... waive paid entry and parking fees at several of their most popular properties, ... Great Barrington in support of REI’s Black Friday #OptOutside Campaign. The Trustees encourage ...
(Date:11/24/2015)... Port Richey, FL (PRWEB) , ... November 24, 2015 , ... ... it deems a growing epidemic as deaths from prescription opioids in the United States ... heroin and cocaine. In 2013 alone, opioids were involved in 37 percent of all ...
(Date:11/24/2015)... (PRWEB) , ... November 24, 2015 , ... ... gather to share their knowledge and experiences at a live taping of the ... Ruesch Center for the Cure of Gastrointestinal Cancers 2015 Symposium at Georgetown University ...
Breaking Medicine News(10 mins):
(Date:11/24/2015)... November 24, 2015   ... dietician deliver s advice and insights on ... More than 50% of Dubai ... healthy according to the DHA   femMED launches comprehensive solutions ...    Dubai residents are not consuming enough to ...
(Date:11/24/2015)... , Nov. 24, 2015 Abaxis, Inc. (NasdaqGS: ... instruments and consumables for the medical, research, and veterinary ... Chief Financial Officer, will present at the 27 th ... 1, 2015 at 11:30 a.m. ET. The conference will ... New York City . ...
(Date:11/24/2015)... 2015 Edelris announce today that they ... Inserm, Poxel, CNRS, UCBL and ENS-Lyon on a new treatment ... --> Hepatitis B virus (HBV) infection is a major ... infected worldwide, 20 to 40% of them being at risk ... the existence of an effective preventive vaccine, the HBV infection ...
Breaking Medicine Technology: