Genetic Discrimination

At Issue

In recent years there have been dramatic advancements in the field of genetic research. Scientists have unraveled the entire human genome and researchers have been able to pinpoint genetic markers for numerous diseases. These medical breakthroughs have enormous potential to improve disease prevention, diagnosis and treatment, but as of this point in time, it is still unknown if a person who has a genetic predisposition towards a specific medical condition will actually ever get that disease.

Many people have raised concerns about the potential for both employers and insurers to discriminate against individuals on the basis of their genetic history. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) prohibits insurers from taking into account genetic information during the underwriting process of group insurance policies. However, the underwriting of individual policies is not addressed in this legislation. As a result, numerous measures have been proposed in the states and on the federal level to comprehensively address the issue of genetic discrimination. However, all of the bills on the table define "genetic information" and "genetic testing" differently, causing a great deal of controversy.

NAHU's Position

NAHU supports the prohibition of the use of genetic information in the health insurance underwriting process, provided that the definition of genetic information is limited to DNA, RNA and related gene testing.Our position statement explains our views in greater detail, but in general we feel that Congress needs to approach making changes to the genetic discrimination provisions contained Health Insurance Portability and Accountability Act of 1996 (HIPAA) with caution. Any new legislation needs to balance the need to protect consumers with the need to keep health insurance affordable and accessible. Provisions that would prevent normal underwriting procedures or expose health insurers or employers to unlimited liability could result in significant increases to health insurance premiums.

What Others Are Saying

Congress is currently considering the Genetic Nondiscrimination Act (S. 358/H.R. 493) which has been introduced in the Senate by Senator Olympia Snowe (R-ME) and in the House by Representative Louise Slaughter (D-NY). While this proposal is more moderate than some that have been considered in the past which included very broad definitions along with a sweeping private right of action, NAHU feels that it could still stand some improvement. In particular we have concern that this legislation may create too broad definitions that will disrupt normal underwriting procedures and could also hinder up-to-date diagnoses and treatments of specific diseases. These definitions may both limit consumer access to appropriate coverage and treatment, and also result in unaffordable health insurance premiums for employers and consumers.

NAHU's Actions

NAHU has been active on both the state and federal levels in expressing our support for genetic discrimination laws that include a sound definition of genetic testing. On March 8, 2007, Janet Trautwein, executive vice president and CEO, testified before the Subcommittee on Health in the Energy and Commerce Committee. During her testimony, she emphasized this point so that health insurance rates remain predictable and as affordable as possible, particularly in the individual market. We issued a media advisory to alert the media of her actions. You can also watch Janet Trautwein in action (time: 3:28:37-3:35:00).

In May of 1998, NAHU testified before the United States Senate Labor and Human Resources Committee on Discrimination in Health Insurance Underwriting and Privacy of Individual Genetic Information. On September 6, 2001, NAHU again testified, this time before the House Education and Workforce Committee's Employer-Employee Relations Subcommittee with a hearing on Genetic Non-Discrimination and Employee Health Plans. In February of 2007, NAHU prepared a statement for the various Congressional committees considering the Genetic Nondiscrimination Act, as well as a press release on this topic. Genetic Non-Discrimination and Employee Health Plans.

Additional Resources

Genetic Discrimination Issue Summary

Discrimination Based on Genetic Information
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