Background

Senate Democratic Leader Tom Daschle (D-SD) and Representative Louise Slaughter (D-NY) have recently re-introduced their Genetic Non-Discrimination in Health Insurance and Employment Act. Senators Tom Harkin (D-IA), Christopher Dodd (D-CT) and Edward Kennedy (D-MA), as well as Representative Constance Morella (R-MD) joined them in support of the legislation. Both S. 318 and H.R. 602 would prevent health insurers from using predictive genetic information to “deny, cancel, or change the rates and conditions of insurance coverage.” The bills would further prohibit the use of predictive genetic information by employers in hiring, firing, promotion and other employment-related decisions.

Problem

According to the National Society of Genetic Counselors, far fewer Americans are opting to take genetic tests than had originally been expected. Many people who would otherwise take a genetic test are deciding against doing so for fear of genetic discrimination. Scientists are also finding it more difficult to recruit participants in genetic research for the same reason.

In a recent speech before the Institute for Genome Research and the American Association for the Advancement of Science, Representative Slaughter outlined her reasons why genetic discrimination should be illegal:

• Genetic science is not yet fully understood. Over time, researchers will further refine our understanding of genes, as well as the interplay among genes and the impact of the environment. Using genetic information to discriminate in the workplace is wrong - especially in the context of determining who should get a job, or who should be eligible for affordable insurance.
  
  
• Having a predictive gene does not necessarily mean you will ever get sick. And even if you do, the disorder might not develop for 10, 20, or 30 years. No one should be passed over for a promotion at work or lose their insurance coverage simply because they might get sick someday.
  
  
• We all have genetic flaws. Dr. Francis Collins, Director of the National Human Genome Project, is frequently quoted as saying every human being is estimated to have between 5 and 50 significant genetic mutations, making us all ultimately unemployable and uninsurable. By allowing genetic discrimination to persist, we effectively penalize the people who happen to have the genes that were discovered first.

What the Genetic Nondiscrimination and Health Insurance and Employment Act Does

• Covers all health insurance programs, including those regulated by the federal government, state-regulated plans and the individual market;
  
  
• Prohibits insurers from restricting enrollment or changing premiums on the basis of predictive genetic information or genetic services;
  
  
• Bans health plans and insurers from requesting or requiring that an individual take a genetic test, or reveal the results of such a test;
  
  
• Prohibits health plans and insurers from pursuing or being provided information on predictive genetic information or genetic services;
  
  
• Covers employers, employment agencies, labor organizations and training programs;
  
  
• Prevents discrimination in hiring, compensation and other personnel processes
  
  
• Prohibits employers from requiring or requesting disclosure of predictive genetic information and allow genetic testing only to monitor the averse effects of hazardous workplace exposures, and,
  
  
• Requires predictive information possessed by an employer to be confidentially maintained and disclosed only to the employee upon request, or to researchers (under the “Common Rule”).

NORD’s Position

The abuse of genetic information has the potential to destroy individuals' careers and do long-term damage to their and their families' health. We must err on the side of caution and ban all genetic discrimination in health insurance and employment. NORD wholeheartedly supports The Genetic Nondiscrimination in Health Insurance and Employment Act.

Whom We Represent

NORD is a federation of approximately 140 voluntary health organizations and nearly 70,00 individuals, researchers and healthcare providers serving people with rare “orphan” diseases. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service.

For More Information

Contact: Diane E. Dorman, Vice President for Public Policy; phone: (301) 421-0018; email: ddorman@rarediseases.org.