108th Congress

Genetic Discrimination

S. 1053, H.R. 1910

Background

Genetic information is being discovered at a remarkable pace. On June 26, 2000, British Prime Minister Tony Blair and President William J. Clinton announced at a White House event that the international Human Genome Project and Celera Genomics Corporation had both completed an initial sequencing of the human genome. On February 12, 2001, the human genome sequencing centers and Celera Genomics Corporation jointly announced the initial analysis of the human genome sequence and its publication in Nature and Science, respectively. The advances made in this area have led to numerous ethical questions regarding the privacy and confidentiality, ownership and control, consent to disclosure, and use of genetic information. Unfortunately, many individuals are reluctant to take advantage of new developments in genetic testing because of the fear that genetic information will be used to deny them either health insurance or employment.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) provided some protection against genetic discrimination, such as barring the use of genetic information in denying or limiting health insurance coverage for members of a group plan. However, the law does not provide protection for persons seeking insurance in the individual market. HIPAA also does not prohibit rating based on genetic information or prevent health insurers from disclosing or demanding access to genetic information.

On February 8, 2000, President Clinton issued Executive Order 13145, which prohibits discrimination based on predictive genetic information in Federal employment.

On June 23, 2001, President George W. Bush raised the issue of genetic discrimination in his weekly radio address. The President urged Congress to work with the Administration to pass a law that is fair, reasonable, and consistent with existing discrimination statutes.

Provisions of the Legislation/Impact on NIH

S. 1053

On May 13, 2003, Senator Olympia J. Snowe (R-ME) introduced S. 1053, the Genetic Information Nondiscrimination Act of 2003. S. 1053 would prevent health insurers and employers from using genetic information to determine eligibility, set premiums, or hire and fire employees.

S. 1053 as reported out of the Senate Committee on Health, Education, Labor and Pensions (HELP) prohibits discrimination in health insurance and employment on the basis of predictive genetic information. The bill would prohibit health insurers in both the group and individual markets from:

• Using genetic information to impose enrollment restrictions or to adjust premium or contribution amounts
• Requesting genetic testing or results except as necessary for treatment, payment, or health care operations
• Requesting or requiring the use of genetic information for the purposes of underwriting

With regards to employment, the bill would grant enforcement powers to the Equal Employment Opportunity Commission. The bill would:

• Make it an unlawful employment practice for an employer, employment agency, labor organization, or training program to discriminate against an individual or deprive an individual of employment opportunities because of genetic information
• Prohibit the collection of genetic information except where necessary to monitor the effects of toxic substances in the workplace, when authorized by the employee, or as required by law
• Safeguard the confidentiality of genetic information in the employment setting

Definition of Genetic Test: The bill defines a genetic test as an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes. It specifically excludes an analysis of proteins or metabolites that does not detect genotypes, mutations, or chromosomal changes, or an analysis of proteins or metabolites that is directly related to a manifested disease, disorder, or pathological condition that could reasonably be detected by a health care professional with appropriate training and expertise in the field of medicine involved.

Definition of Genetic Information: The bill defines genetic information as information about the genetic tests of an individual or family member, or the occurrence of a disease or disorder in family members of an individual. It specifically excludes information about the age or sex of an individual.

H.R. 1910

On May 1, Representative Louise McIntosh Slaughter (D-NY) introduced H.R. 1910, the Genetic Nondiscrimination in Health Insurance and Employment Act.

H.R. 1910 differs from S. 1053 in the following provisions:

• Definition of Genetic Test: The bill defines a genetic test as the analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes.
• Definition of Protected Genetic Information: The bill defines protected genetic information as information about an individual’s genetic tests, information about genetic tests of an individual’s family members, or information about the occurrence of a disease or disorder in family members. It specifically excludes the following: information about an individual’s sex or age; information about chemical, blood, or urine analyses of an individual, unless these analyses are genetic tests; or information about an individual’s physical exams and other information that indicates an individual’s current health status.
• Enforcement and Penalties: In general, H.R. 1910 would permit courts to award any appropriate legal or equitable relief, including payment of attorney’s fees and costs. It would also allow for higher monetary penalties to be assessed against defendants.

Status and Outlook

S. 1053 was introduced by Senator Snowe on May 13, 2003, and was referred to the Senate HELP Commmittee. On May 21, the Senate HELP Committee held a markup of the bill. Senator Judd Gregg (R-NH), Chair, offered an amendment in the nature of a substitute, which reflected a compromise that had been reached. The Committee passed the measure on May 21. The Committee report (108-122) was filed on July 31. On October 14, the Senate passed S. 1053 by a vote of 95 to 0.

H.R. 1910 was introduced by Representative Slaughter on May 1, 2003, and was referred to the House Energy and Commerce Subcommittee on Health, the House Education and the Workforce Subcommittee on Employer-Employee Relations, and the House Committee on Ways and Means. No further action has occurred on this legislation.