Featured Research

from universities, journals, and other organizations

Yale Cancer Center Study Underscores Fears Of Discrimination Over Genetic Testing

Date:
October 25, 1999
Source:
Yale University
Summary:
Fear of genetic discrimination often keeps those concerned they may be at risk for developing hereditary cancer away from the genetic testing that can -- in some cases -- save their lives. Concerns about discrimination, privacy and confidentiality in insurance and employment have even led to state and federal legislation to help protect these individuals.

(NEW HAVEN) -- Fear of genetic discrimination often keeps those concerned they may be at risk for developing hereditary cancer away from the genetic testing that can -- in some cases -- save their lives. Concerns about discrimination, privacy and confidentiality in insurance and employment have even led to state and federal legislation to help protect these individuals.

The same fears of genetic discrimination are shared by experienced cancer genetic counselors, according to a study led by Ellen Matloff, M.S., director of the Cancer Genetic Counseling Shared Resource at the Yale Cancer Center. However, most of the counselors in the study said they would go ahead with testing -- if certain safeguards were in place. Results of that study are being presented today at the annual meeting of the American Society of Human Genetics in San Francisco, CA.

In a survey of nearly 300 active cancer genetic counselors, the vast majority (85% and 91%) said they would pursue genetic testing for BRCA (breast cancer gene) or HNPCC (hereditary nonpolyposis colon cancer gene) mutation if one parent or sibling was a known carrier of the mutation. However, 68% said they would NOT BILL genetic testing charges to their health insurance company, and 26% said they would use an alias. In addition, 82% of counselors said that if tested positive, they would share the results with their physicians, but many would not want their carrier status documented in their medical records.

"Those closest to the issue still believe the benefits of genetic testing outweigh the risks," said Matloff. "But there are real risks, and this study underscores the need for better legislation in this area. There are loopholes that need to be closed."

While advising caution in genetic testing, Matloff said there have been no documented cases of discrimination arising from the genetic counseling and testing program at the Yale Cancer Center. "We are very aware of and sympathetic to these concerns," said Matloff. "We have in place a number of safeguards that protect patients and make them feel more comfortable."

Results of this study are being presented today during a press briefing and round table discussion at the American Society of Human Genetics Annual Meeting in California. Joining Matloff in a session entitled "Genetic Testing: Should Consumers Worry?" are Mary Claire King, Ph.D., pioneer in the search for the BRCA1 and BRCA2 mutations, Mark Hall, an attorney who conducted a study in seven states with different laws restricting the use of genetic information by health insurers, and Hank Greely, professor of law and co-director of the program in Genomics, Ethics and Society at Stamford University.

###

The Cancer Genetic Counseling Program is a shared resource of the Yale Cancer Center, one of a select network of comprehensive cancer centers in the country designated by the National Cancer Institute and the only one in Southern New England. Bringing together the resources of Yale-New Haven Hospital and the Yale University School of Medicine, its mission encompasses patient care, research, cancer prevention and control, community outreach and education.


Story Source:

The above story is based on materials provided by Yale University. Note: Materials may be edited for content and length.


Cite This Page:

Yale University. "Yale Cancer Center Study Underscores Fears Of Discrimination Over Genetic Testing." ScienceDaily. ScienceDaily, 25 October 1999. <www.sciencedaily.com/releases/1999/10/991025075308.htm>.
Yale University. (1999, October 25). Yale Cancer Center Study Underscores Fears Of Discrimination Over Genetic Testing. ScienceDaily. Retrieved July 24, 2014 from www.sciencedaily.com/releases/1999/10/991025075308.htm
Yale University. "Yale Cancer Center Study Underscores Fears Of Discrimination Over Genetic Testing." ScienceDaily. www.sciencedaily.com/releases/1999/10/991025075308.htm (accessed July 24, 2014).

Share This




More Health & Medicine News

Thursday, July 24, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

New Painkiller Designed To Discourage Abuse: Will It Work?

New Painkiller Designed To Discourage Abuse: Will It Work?

Newsy (July 24, 2014) The FDA approved Targiniq ER on Wednesday, a painkiller designed to keep users from abusing it. Like any new medication, however, it has doubters. Video provided by Newsy
Powered by NewsLook.com
Doctor At Forefront Of Fighting Ebola Outbreak Gets Ebola

Doctor At Forefront Of Fighting Ebola Outbreak Gets Ebola

Newsy (July 24, 2014) Sheik Umar Khan has treated many of the people infected in the Ebola outbreak, and now he's become one of them. Video provided by Newsy
Powered by NewsLook.com
Condemned Man's US Execution Takes Nearly Two Hours

Condemned Man's US Execution Takes Nearly Two Hours

AFP (July 24, 2014) America's death penalty debate raged Thursday after it took nearly two hours for Arizona to execute a prisoner who lost a Supreme Court battle challenging the experimental lethal drug cocktail. Duration: 00:55 Video provided by AFP
Powered by NewsLook.com
China's Ageing Millions Look Forward to Bleak Future

China's Ageing Millions Look Forward to Bleak Future

AFP (July 24, 2014) China's elderly population is expanding so quickly that children struggle to look after them, pushing them to do something unexpected in Chinese society- move their parents into a nursing home. Duration: 02:07 Video provided by AFP
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:
from the past week

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins