109th Congress

Genetic Nondiscrimination

S. 306, H.R. 1227

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 Project sequencing centers and Celera Genomics Corporation jointly announced the initial analysis of the human genome sequence and its publication in Nature and Science, respectively. These and other advances made in this field 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 health insurance or employment.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) provides 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

On February 7, 2005, Senator Olympia J. Snowe (R-ME) introduced S. 306, the Genetic Information Nondiscrimination Act of 2005. The bill would have prevented health insurers and employers from using genetic information to determine eligibility, set premiums, or hire and fire employees.

As passed by the Senate, S. 306 would have prohibited discrimination in health insurance and employment on the basis of predictive genetic information. The bill would have also prohibited health insurers in both the group and individual markets from:

• Using genetic information to impose enrollment restrictions or adjust premium or contribution amounts
• Requesting genetic testing or test 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 have granted enforcement powers to the Equal Employment Opportunity Commission. The bill would have:

• Made it unlawful 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
• Prohibited 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
• Safeguarded the confidentiality of genetic information in the workplace

The bill would have defined a genetic test as an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes. The bill specifically would have excluded any analysis of proteins or metabolites that does not detect genotypes, mutations, or chromosomal changes and any 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 medical field involved.

The bill would have defined 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. The bill specifically would have excluded information about the age or sex of an individual.

The key provisions of H.R. 1227 were the same as those of S. 306.

Status and Outlook

S. 306 was introduced by Senator Snowe on February 7, 2005, and was approved by the Senate Committee on Health, Education, Labor and Pensions on February 9. The bill was passed by the Senate by a vote of 98 to 0 on February 17. No further action occurred on this legislation during the 109th Congress.

H.R. 1227, the companion bill to S. 306, was introduced by Representative Judy Biggert (R-IL) on March 10, 2005, and was referred to the House Committees on Education and the Workforce and on Ways and Means. No further action occurred on this legislation during the 109th Congress.