	Introduction

In order for Congress to address the key issue that it faces with respect to genetic discrimination, namely, whether the potential for genetic discrimination by employers and insurers merits protections for genetic information that are more extensive than those already in place for health information in general, there are several fundamental points that it may wish to consider. These include an understanding of what genetic information and discrimination are, how current laws affect employers' and insurers' use of genetic and other health information, how proposed legislation would amend current law, and the arguments that have been made both in favor of and against the passage of legislation. Since that time, many of the arguments and positions supporting and opposing genetic nondiscrimination legislation have remained largely unchanged. On January 18, 2007, President Bush called on Congress to pass bipartisan genetic nondiscrimination legislation. Genetic nondiscrimination legislation is supported by consumer groups, the medical profession, researchers and the medical products industry (including pharmaceutical companies). Opposition to genetic nondiscrimination legislation has come from some members of the insurance industry and from employers, represented broadly by the Genetic Information Nondiscrimination in Employment (GINE) Coalition, which includes the U.S. Chamber of Commerce. Allaying the public's fears, they argue, will encourage individuals to seek beneficial health services, participate in much-needed clinical research, and otherwise reap the benefits of the publicly funded Human Genome Project (HGP). One bill introduced in the 108 th Congress ( H.R. Health information, which includes genetic information, is currently used by health insurers and employers. The SSA contains provisions that prohibit discrimination in the pricing or issuance of Medigap policies on the basis of health status. First, is genetic information different from other health information? What Evidence Is There That Genetic Discrimination Exists? The comments revealed several anecdotal cases of discrimination, and resulted in the committee forwarding two letters to the Secretary of Health and Human Services (HHS) urging support for nondiscrimination protections:
During consultations with the public SACGT heard from many Americans who are concerned about the misuse of genetic information by third parties, such as health insurers and employers, and the potential for discrimination based on that information. The Genetic Information Nondiscrimination Act of 2007 (S. 358/H.R. Title I: Is the Privacy Rule Sufficient to Protect Consumers? Further, they do not believe that discrimination issues will go away in the near term. The House Committee on Education and Labor adopted an amendment to H.R. 493 Protect Genetic Information? The bills' precise definition of genetic information, and thus protections that they would provide, hinge on factors discussed below, including the definition of family medical history, differences between Title I and Title II, and predictive versus manifested disease information combined with the type of genetic test performed. Opponents argued that inclusion of distant or non-blood related individuals further extends the potential for litigation against insurers or employers.
A key policy issue before Congress is whether the potential for genetic discrimination by employers and insurers merits protections for genetic information that are more extensive than those already in place for health information. For the stated purpose of prohibiting discrimination on the basis of genetic information with respect to health insurance and employment, the Genetic Information Nondiscrimination Act of 2007 (H.R. 493) was introduced in the House on January 16, 2007 and was passed by the House on April 25, 2007. On January 22, 2007, the act was introduced in the Senate (S. 358) and was reported favorably out of the HELP Committee on March 29, 2007. On April 24, 2008, the Senate took up H.R. 493, replaced the existing language with an amendment in the nature of a substitute, and passed the measure, as amended, by a vote of 95-0. H.R. 493, as amended and passed by the Senate, is very similar to the version passed by the House last year. The most significant difference is new language strengthening the "firewall" between Title I and Title II of the act.
Genetic nondiscrimination legislation is supported by consumer groups, the medical profession, researchers, the medical products industry (including pharmaceutical companies), and President Bush, and are opposed primarily by the U.S. Chamber of Commerce. Since the first bills were introduced in the 103rd Congress, many of the arguments and positions supporting and opposing genetic nondiscrimination legislation have remained largely unchanged. Supporters of nondiscrimination legislation feel that current laws are not sufficient to protect individuals from discrimination in health insurance or employment. Supporters of the legislation further contend that without protection, individuals are hesitant to seek potentially beneficial genetic services or participate in much needed clinical research. Opponents believe that current law provides sufficient protection. They are primarily concerned that new legislation will provide further incentives and additional opportunities for litigation against employers.
Collectively, genetic diseases and common diseases with a genetic component pose a significant public health burden. With completion of the human genome sequence, scientists are now focusing on the development of clinical applications based on the sequence information. One such application, clinical genetic testing, is becoming available at a rapid rate, and some tests are beginning to be included in health insurance benefits packages. Genetic testing may both facilitate and be inhibited by the potential for genetic discrimination. Issues surrounding nondiscrimination addressed in this report include:
What is health information and how is it currently used by health insurers and employers? What is genetic information? Is genetic information different from other health information? What evidence exists to suggest that discrimination is a problem? Would the proposed legislation be sufficient to protect "genetic information" and "genetic tests" that are of concern?