air jordans canada goose outlet legend blue 11s jordan retro 7 beats by dre cheap Michael Kors outlet jordan 7 canada goose outlet jordan retro 7 jordan retro 7 legend blue 11s canada goose jordan retro 7 canada goose outlet nike retro jordans coach factory retro jordans nike legend blue 11s beats by dre cheap louis vuitton outlet louis vuitton outlet louis vuitton outlet beats by dre cheap beats by dre cheap uggs outlet louis vuitton outlet jordan retro 12 uggs outlet jordan retro 12 louis vuitton louis vuitton sac nike air max jordan retro 12 jordan 12 moncler jackets louis vuitton sac nike free run moncler jackets jordan 7 retro jordans retro jordans jordan retro 7 canada goose outlet legend blue 11s jordan 7 jordan retro 7 canada goose canada goose outlet jordan retro 7 jordan retro 7 nike legend blue 11s Michael Kors outlet jordan retro 7 legend blue 11s air jordans canada goose outlet coach outlet moncler jackets coach outlet jordan retro 12 jordan retro 12 louis vuitton sac louis vuitton outlet louis vuitton sac beats by dre cheap jordan 12 nike free run nike air max louis vuitton louis vuitton sac beats by dre cheap moncler jackets sac louis vuitton nike air max moncler jackets louis vuitton outlet jordan retro 12 canada goose outlet retro jordans Michael Kors outlet legend blue 11s canada goose outlet coach outlet coach factory canada goose outlet retro jordans Michael Kors outlet jordan retro 7 legend blue 11s canada goose outlet canada goose outlet beats by dre cheap canada goose outlet canada goose legend blue 11s retro jordans canada goose outlet moncler jackets nike free run nike air max moncler jackets nike air max nike air max uggs outlet beats by dre cheap uggs coach outlet nike free run louis vuitton outlet nike free run uggs outlet jordan retro 12 louis vuitton sac louis vuitton sac beats by dre cheap moncler jackets nike air max canada goose outlet nike jordan retro 7 jordan retro 7 canada goose outlet canada goose outlet nike jordan retro 7 legend blue 11s Michael Kors outlet coach factory Michael Kors outlet canada goose outlet legend blue 11s air jordans nike Michael Kors outlet Michael Kors outlet jordan retro 11 legend blue 11s beats by dre cheap louis vuitton outlet sac louis vuitton louis vuitton outlet uggs nike air max louis vuitton sac nike air max beats by dre cheap beats by dre cheap nike air max jordan 12 nike air max moncler jackets nike free run coach outlet coach outlet moncler jackets jordan retro 12 coach outlet Michael Kors outlet Michael Kors outlet legend blue 11s Michael Kors outlet canada goose outlet nike coach outlet Michael Kors outlet canada goose jordan retro 7 canada goose nike retro jordans canada goose outlet beats by dre cheap canada goose outlet retro jordans Michael Kors outlet legend blue 11s Michael Kors outlet jordan retro 12 nike free run moncler jackets nike free run louis vuitton sac jordan retro 12 moncler jackets louis vuitton sac louis vuitton louis vuitton outlet coach outlet uggs outlet moncler jackets louis vuitton louis vuitton outlet nike free run coach outlet louis vuitton outlet jordan retro 12 moncler jackets jordan 4 jordan 4 jordan retro 11 jordan 11 jordan retro 11 louis vuitton outlet michael kors outlet air jordan 11 canada goose sale uggs on sale jordan retro 11 louis vuitton pas cher jordan 4 jordan retro 7 jordan 11 louis vuitton outlet jordan retro 11 louis vuitton outlet jordan 11 louis vuitton outlet canada goose outlet french blue 7s jordan retro 4 uggs on sale louis vuitton jordan retro 11 louis vuitton outlet jordan retro 11 air jordans jordan 13 canada goose outlet jordan 11 canada goose sale canada goose outlet jordan 11 legend blue michael kors outlet jordan 7 french blue jordan 7 french blue jordan 11 legend blue 11s air jordan 4 jordan retro 11 french blue 7s michael kors outlet jordan 11 louis vuitton outlet uggs outlet michael kors outlet jordan 11 jordan 4 air jordans jordan retro 11 louis vuitton outlet louis vuitton jordan 11 jordan retro 11 jordan retro 11 louis vuitton outlet michael kors outlet jordan retro 11 uggs on sale red cements 10s louis vuitton outlet jordan 11 air jordans jordan retro 11 michael kors outlet michael kors outlet french blue 7s louis vuitton outlet jordan retro 11 jordan 11 canada goose outlet jordan 4 oreo michael kors outlet michael kors outlet jordan 11 jordan retro 4 jordan retro 11 michael kors outlet
Home > Learn > Genetic Discrimination: Myth or Reality?
Untitled Document

 

 

beats by dre cheap coach outlet canada goose canada goose outlet legend blue 11s legend blue 11s legend blue 11s beats by dre cheap jordan retro 7 legend blue 11s jordan retro 7 Michael Kors outlet nike nike jordan retro 7 jordan retro 7 Michael Kors outlet legend blue 11s canada goose outlet retro jordans beats by dre cheap louis vuitton outlet louis vuitton outlet nike free run jordan retro 12 coach outlet louis vuitton sac sac louis vuitton louis vuitton sac moncler jackets jordan retro 12 moncler jackets beats by dre cheap moncler jackets jordan retro 12 moncler jackets louis vuitton sac louis vuitton outlet moncler jackets beats by dre cheap jordan retro 7 Michael Kors outlet beats by dre cheap jordan retro 7 jordan retro 7 canada goose outlet canada goose outlet canada goose Michael Kors outlet beats by dre cheap jordan retro 7 retro jordans nike Michael Kors outlet canada goose outlet legend blue 11s Michael Kors outlet canada goose outlet nike beats by dre cheap beats by dre cheap jordan retro 12 coach outlet louis vuitton outlet jordan retro 12 louis vuitton outlet louis vuitton outlet jordan retro 12 nike air max jordan retro 12 beats by dre cheap coach outlet louis vuitton sac coach outlet jordan retro 12 nike free run moncler jackets moncler jackets nike air max jordan retro 12 canada goose outlet air jordans jordan 7 canada goose outlet jordan retro 7 canada goose outlet jordan retro 7 Michael Kors outlet nike canada goose outlet canada goose outlet Michael Kors outlet nike coach outlet jordan retro 7 canada goose outlet retro jordans jordan retro 7 retro jordans Michael Kors outlet beats by dre cheap jordan retro 12 louis vuitton outlet louis vuitton outlet beats by dre cheap uggs outlet beats by dre cheap louis vuitton sac nike air max jordan retro 12 louis vuitton outlet beats by dre cheap nike air max jordan retro 12 moncler jackets moncler jackets moncler jackets louis vuitton sac jordan retro 12 uggs outlet coach outlet jordan retro 7 jordan retro 7 canada goose outlet Michael Kors outlet Michael Kors outlet jordan retro 7 coach outlet jordan retro 7 nike nike Michael Kors outlet jordan retro 7 canada goose Michael Kors outlet jordan 7 canada goose outlet coach factory Michael Kors outlet Michael Kors outlet louis vuitton outlet louis vuitton outlet jordan 12 moncler jackets louis vuitton outlet jordan retro 12 louis vuitton outlet jordan retro 12 louis vuitton outlet coach outlet jordan retro 12 coach outlet beats by dre cheap nike air max jordan retro 12 nike free run sac louis vuitton jordan retro 12 moncler jackets louis vuitton outlet Michael Kors outlet legend blue 11s canada goose canada goose outlet Michael Kors outlet Michael Kors outlet nike coach outlet Michael Kors outlet jordan retro 7 canada goose outlet beats by dre coach outlet legend blue 11s Michael Kors outlet jordan retro 7 nike nike Michael Kors outlet legend blue 11s louis vuitton sac louis vuitton outlet louis vuitton sac nike free run uggs uggs jordan 12 moncler jackets beats by dre cheap nike free run louis vuitton outlet beats by dre cheap beats by dre cheap jordan retro 12 jordan 12 uggs outlet jordan retro 12 louis vuitton outlet beats by dre cheap louis vuitton sac jordan 11 legend blue michael kors outlet louis vuitton outlet oreo 4s jordan retro 11 uggs outlet louis vuitton outlet louis vuitton outlet michael kors outlet jordan 11 michael kors outlet air jordan 4 jordan retro 11 oreo 4s jordan 11 uggs outlet michael kors outlet jordan 11 jordan retro 11 jordan retro 7 louis vuitton outlet jordan 11 canada goose sale michael kors outlet michael kors outlet jordan retro 4 jordan retro 4 jordan 11 louis vuitton outlet legend blue 11s legend blue 11s louis vuitton outlet jordan 7 french blue air jordans jordan 4 michael kors outlet louis vuitton french blue 7s legend blue 11s jordan 11 legend blue jordan retro 11 michael kors outlet jordan 11 louis vuitton outlet air jordan 4 jordan 11 jordan retro 11 michael kors outlet jordan retro 4 jordan 11 louis vuitton outlet jordan 7 french blue jordan 4 jordan retro 11 jordan retro 11 jordan 11 louis vuitton outlet louis vuitton outlet michael kors outlet jordan 11 legend blue jordan retro 4 jordan retro 11 french blue 7s michael kors outlet jordan 11 jordan 11 jordan retro 11 jordan retro 4 jordan 11 canada goose sale michael kors outlet retro jordans louis vuitton outlet jordan 11 jordan retro 7 canada goose outlet michael kors outlet louis vuitton outlet michael kors outlet legend blue 11s
Ethical Issues
  GENTIC HEALTH SPECIAL FEATURE:
Genetic Discrimination: Myth
or Reality?

By Michele Simon, JD, MPH





Genetic discrimination is a phrase that can evoke a host of fears from anyone who has a genetic condition or is currently contemplating genetic testing. These concerns include fear of not getting or losing health insurance benefits; fear of losing a job or promotion; or fear of private information becoming public. Many health professionals are concerned that at-risk populations are forgoing genetic testing, and are thus losing out on potential benefits. In fact, studies show that a majority of genetic counselors believe that discrimination by health insurers is widespread and common. However, experts are divided over whether significant evidence of genetic discrimination currently exists.

 
 
 

The Case for Discrimination

Anecdotal evidence tends to indicate a problem worthy of additional investigation.
The answer to how much genetic discrimination currently exists depends on several factors, including who you ask. Complicating matters is the problem of distinguishing between two different, but related, potential arenas for discrimination — health insurance and employment. Also, documenting cases of genetic discrimination is problematic because it's difficult to prove and many people are afraid to come forward. As a result, it's hard to collect publishable data to document that a problem currently exists. So we are left mostly with individual cases. But some experts say we have enough reports of genetic discrimination to create cause for concern. Here's a sampling of the evidence:
  • A 1995 survey of people with a known genetic condition in their family found that 22 percent reported being denied health insurance because of their genetic status, whether or not they were already sick.

  • A woman with a family history of Huntington's disease tried to apply for health insurance. The company wanted her to prove she didn't have the mutation, but she didn't want to know. She couldn't get coverage without the test.

  • Another woman's mother had Huntington's. When her employer found out about her plans to get tested, he fired her because of the potential costs of employing someone with the disease.

  • Terri Seargent was identified as having Alpha-1, a genetic disorder that can affect the lungs and/or liver. When her employer received a bill for her first preventive treatment, he abruptly fired her, despite having always referred to her job performance as exemplary. Someone with the gene for Alpha -1 will not necessarily become symptomatic. Nevertheless, according to the Alpha-1 Association, at least 30 people have been denied private health or life insurance because of their genetic status.

How much these reports and others like them indicate a more widespread problem isn't quite clear. It's possible that these stories are exceptions rather than being indicative of a trend. Researchers refer to individual cases as "anecdotal evidence" and tend to give them less weight than studies that collect data and then report statistically significant results. However, anecdotal evidence tends to indicate a problem worthy of additional investigation.

"Discrimination is probably going to increase because current laws are ineffective." - Jeremy Gruber, National Workrights Institute
Jeremy Gruber is with the National Workrights Institute, a member of the Coalition for Genetic Fairness. He says that although most of the evidence right now is anecdotal, it is substantial: "Just because it's anecdotal doesn't mean that it doesn't exist or that it should be questioned. While it's not widespread, there are no signs of it abating. In fact, it's probably going to increase because current laws are ineffective to protect people."

In an effort to monitor and document reports of genetic discrimination and privacy abuse, the Genetic Alliance, a non-profit genetic advocacy group, is conducting a survey. The Alliance says they have received over a hundred surveys so far that indicate some form of discrimination. Although they have not yet been able to publish their data, implementation of the survey is ongoing.

top

 

The Case Against Discrimination

"Insurers aren't collecting genetic testing information, or even family histories." - Mark Hall, Wake Forest University
In one of the few published studies of genetic discrimination, Mark Hall, Professor of Law and Public Health at Wake Forest University, examined health insurance policies. Hall set out to study the effectiveness of state genetic discrimination laws, expecting to learn about the pattern of insurance discrimination, but discovered there was very little discrimination to begin with. He studied individual plans and small group plans, reviewing 150 insurance application forms. He found only two cases of insurers asking about genetic conditions. He explains: "The insurers aren't collecting genetic testing information, or even family histories very much. I interviewed actuaries and underwriters and they said that this sort of information just isn't very useful for their analysis. And this caught me by surprise."

Hall also had someone pose as a potential insurance enrollee who had a breast cancer gene. Most insurance agents — 85 percent — said this would not be a problem. A few said it might mean the rates would be higher, but would not deny a policy. "So that's not so bad; you just have to shop around a bit," says Hall.

"To my knowledge, there has not been a single case of insurance discrimination based upon genetic information." - Allan Bombard, Aetna U.S. Healthcare
According to Allan Bombard, MD, one of four women's health medical directors at Aetna U.S. Healthcare and a medical geneticist, the information gained from genetic testing or family history is not being used to discriminate against members by health insurers. "I think there is a wide misperception about how the information is used. To my knowledge, there has not been a single case of insurance discrimination based upon genetic information."

Gruber admits that genetic discrimination among health insurers is not standard practice, but says it's still a problem: "An insurance company would not be so bold as to put a question on application, but it's going on individually. They will never admit it, but if the health insurance companies really weren't interested in this, why have the insurance lobbies invested significant time and money into weakening and sometimes killing genetic discrimination protection laws in various states?"

top

 

Future Potential and the Fear Factor

Regardless of how much discrimination is currently going on, the potential exists for more in the future.
Most experts can agree that regardless of how much discrimination is currently going on, the potential exists for more in the future, as genetic testing becomes less expensive and more widespread. They also agree that fear of discrimination is a major problem and that the best solution is increased education efforts and passing better discrimination protection laws.

Bombard is particularly concerned about people foregoing valuable testing. "In my experience, some women will refuse testing for the breast cancer gene despite her family history, due to fear. If people aren't willing to use the information, they will never be able to get truly preventive care; it will be a lost opportunity. We doctors need to educate people about this. People don't understand it, so they are fearful."

"If people aren't willing to use the information, they will never be able to get truly preventive care." - Bombard
Paula Gregory, Ph.D. is director of outreach and education in human cancer genetics at Ohio State University. She predicts major changes ahead because we won't just be talking about a few rare diseases. "We will soon discover that everyone's at risk for something. And just how are insurers going to discriminate against everyone who has a high risk of heart disease," she wonders.

Gregory is especially concerned about diseases such as breast cancer where the risk is less clear than say, Huntington's disease. "The real question is how the information is going to be interpreted. With breast cancer, the gene mutation really just indicates susceptibility and sometimes we get ambiguous results. The insurance companies can't know what it means because the geneticists don't."

Hall predicts that discrimination protection laws could have the greatest impact in forestalling discrimination in the future.
In his study, Hall asked health insurers about future plans: "About half said they don't see this ever really being an issue. The other half said we're not doing it now, but it could happen if the information is valuable, if our competitors start using it, they may be forced to use it do too. So the views are split." Hall predicts that discrimination protection laws could have the greatest impact in forestalling discrimination in the future.

Gruber agrees, saying that if we act now, we could prevent discrimination from getting worse. "Unfortunately, due to the lack of overwhelming evidence of a problem, it's not getting proper attention, especially at the federal level. But we have a real opportunity, probably for the first time in the history of this country, to enact legislation before discrimination becomes widespread. This isn't the type of situation we had when we enacted civil rights legislation after hundreds of years of discrimination. We can prevent this before it occurs."

top

 

References

Buelow, N. (2000). Genetic Discrimination: The Alpha-1 Case. on the World Wide Web: http://www.ramazziniusa.org/geneticdiscrim.htm.

Genetic discrimination and health insurance: A Case study on breast cancer. (1995). Bethesda, Maryland, 11 July, workshop sponsored by the NAPBC and the NIH-DOE Working Group on the ELSI of Human Genome Research.

Hall MA, Rich SS. (2000). Laws restricting health insurers' use of genetic information: impact on genetic discrimination. Am J Hum Genet. Jan;66(1):293-307.

Kass NE. (1997). The implications of genetic testing for health and life insurance. In Rothstein MA (Ed.), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic ErDCW (pp. 299-316). Yale University Press.

Personal communication. (2000). Paula Gregory, PhD, Assistant Professor, Ohio State University.

Personal communication. (2000). Allan Bombard, MD, Women's Health Medical Director, Aetna U.S. Healthcare.

Personal communication. (2000). Jeremy Gruber, National Workrights Institute.

Personal communication. (2000). Nancye Buelow, Secretary of the Genetic Alliance and President, Alpha-1 Association.

<<Previous Article
Main Topic Page
Next Article>>
Why Genetic Information is Different

 

Untitled Document

©Copyright 2011 Latest Medical, Inc.. All Rights Reserved.
Contact Us

coach factory coach outlet canada goose outlet Michael Kors outlet legend blue 11s legend blue 11s coach outlet legend blue 11s jordan retro 7 Michael Kors outlet canada goose outlet nike jordan retro 7 jordan retro 7 Michael Kors outlet canada goose outlet canada goose outlet retro jordans Michael Kors outlet coach factory louis vuitton outlet nike free run beats by dre cheap nike air max moncler jackets sac louis vuitton sac louis vuitton louis vuitton sac louis vuitton outlet moncler jackets jordan retro 12 moncler jackets beats by dre cheap jordan retro 12 jordan retro 12 louis vuitton louis vuitton sac moncler jackets beats by dre cheap jordan retro 12 canada goose outlet canada goose nike Michael Kors outlet canada goose canada goose outlet beats by dre air jordans retro jordans legend blue 11s Michael Kors outlet canada goose canada goose outlet jordan retro 7 legend blue 11s Michael Kors outlet Michael Kors outlet legend blue 11s beats by dre cheap jordan retro 7 louis vuitton outlet moncler jackets louis vuitton outlet jordan retro 12 jordan retro 12 louis vuitton outlet nike air max nike free run coach outlet nike free run moncler jackets beats by dre cheap moncler jackets louis vuitton sac beats by dre cheap louis vuitton sac coach outlet louis vuitton outlet beats by dre cheap coach outlet canada goose outlet jordan retro 7 beats by dre cheap canada goose outlet beats by dre legend blue 11s Michael Kors outlet retro jordans Michael Kors outlet jordan retro 7 jordan retro 7 coach factory jordan retro 7 Michael Kors outlet Michael Kors outlet coach outlet canada goose retro jordans canada goose outlet beats by dre cheap moncler jackets moncler jackets sac louis vuitton beats by dre cheap jordan retro 12 louis vuitton outlet moncler jackets louis vuitton sac beats by dre cheap beats by dre cheap moncler jackets louis vuitton nike free run louis vuitton sac louis vuitton outlet louis vuitton sac jordan retro 12 moncler jackets moncler jackets uggs outlet legend blue 11s Michael Kors outlet Michael Kors outlet canada goose outlet jordan retro 7 legend blue 11s Michael Kors outlet beats by dre jordan retro 7 Michael Kors outlet retro jordans retro jordans nike canada goose outlet retro jordans canada goose outlet coach factory retro jordans coach outlet air jordans moncler jackets moncler jackets beats by dre cheap louis vuitton outlet louis vuitton outlet louis vuitton sac beats by dre cheap nike air max jordan retro 12 louis vuitton outlet nike free run jordan retro 12 jordan retro 12 moncler jackets moncler jackets jordan retro 12 jordan retro 12 moncler jackets sac louis vuitton moncler jackets coach factory jordan retro 7 canada goose outlet retro jordans canada goose outlet coach factory canada goose beats by dre cheap canada goose retro jordans nike air jordans retro jordans retro jordans jordan 7 canada goose outlet legend blue 11s retro jordans jordan retro 7 coach outlet jordan retro 12 louis vuitton outlet nike air max moncler jackets louis vuitton sac beats by dre cheap coach outlet nike air max moncler jackets moncler jackets moncler jackets moncler jackets moncler jackets jordan retro 12 uggs moncler jackets louis vuitton outlet jordan retro 12 jordan retro 12 louis vuitton sac jordan retro 4 michael kors outlet jordan retro 11 jordan 11 jordan 11 uggs outlet louis vuitton outlet jordan 11 louis vuitton outlet red cements 10s air jordan 4 jordan retro 11 uggs outlet french blue 7s louis vuitton outlet jordan 11 legend blue jordan 4 jordan retro 11 jordan 10 red cements michael kors outlet jordan 13 michael kors outlet air jordans jordan 11 jordan retro 7 jordan 11 jordan retro 4 louis vuitton outlet jordan 4 jordan retro 11 legend blue 11s jordan retro 11 air jordan 11 air jordans jordan 4 michael kors outlet louis vuitton outlet french blue 7s louis vuitton outlet louis vuitton outlet louis vuitton outlet air jordans retro jordans french blue 7s uggs on sale michael kors outlet michael kors outlet jordan retro 11 canada goose uggs on sale jordan 11 jordan 11 louis vuitton outlet french blue 7s jordan 4 uggs outlet air jordan 4 jordan 10 red cements jordan 4 jordan 11 legend blue legend blue 11s louis vuitton outlet uggs outlet michael kors outlet michael kors outlet jordan retro 11 michael kors outlet jordan 7 french blue air jordans louis vuitton outlet jordan 11 michael kors outlet jordan 11 jordan 7 french blue michael kors outlet jordan retro 4 jordan retro 4 jordan retro 11 michael kors outlet jordan retro 11