107th Congress

Genetic Discrimination

S. 19, S. 318/H.R. 602, S. 382, and S. 1995

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 of, 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 (HIPAA) of 1996 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 did not provide protection for persons seeking insurance in the individual market. HIPAA also did not prohibit rating based on genetic information or prevent health insurers from disclosing or demanding access to genetic information.

On February 8, 2000, former 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. 19—Protecting Civil Rights for All Americans Act

S. 19, the Protecting Civil Rights for All Americans Act, was introduced on January 22, 2001, by Senator Thomas A. Daschle (D-SD). Title IV of the legislation would have prohibited discrimination based on genetic information in health insurance and employment.

This legislation would have prohibited health insurers in both the group and individual markets from the following:

• Denying eligibility to a group or adjusting premium rates, based on predictive genetic information of an individual or information about the request for or receipt of genetic services by an individual or a family member
• Requesting or requiring genetic testing, or collecting predictive genetic information
• Disclosing predictive genetic information or information about the request for or receipt of genetic services to 1) any other health plan, 2) insurance agents, 3) third-party administrators, 4) the Medical Information Bureau, 5) an employer or plan sponsor, and 6) any other person the Secretary of Health and Human Services (HHS) may specify in regulations.

Under the bill, health insurers would have been permitted to request predictive genetic information for the purpose of paying a claim, as long as such information is used only by someone who requires it.

The legislation would have amended the Public Health Service Act, the Employee Retirement Income Security Act, the Internal Revenue Code, and the Social Security Act (regarding certain provisions governing Medicare coverage).

With respect to employment:

• The bill would have prohibited discrimination in hiring or in terms of employment based on predictive genetic information or a request for or receipt of genetic services by individuals or their family members.
• An employer would have been prohibited from collecting predictive genetic information about an individual or a family member except for 1) genetic monitoring of the biological effects of toxic substances in the workplace, but only if a) the individual is informed, b) the monitoring is consistent with any standards issued by the U.S. Department of Labor, and c) statistics are collected in such a way that the identity of a specific individual is not disclosed, or 2) where genetic services are offered by the employer, and the individual provides informed consent.

S. 318 / H.R. 602—Genetic Nondiscrimination in Health Insurance and Employment Act

Senator Daschle and Representative Louise McIntosh Slaughter (D-NY) re-introduced prior legislation on this matter in the 107th Congress as S. 318 and H.R. 602, respectively. The key provisions of these measures are the same as those provided in S. 19.

S. 382—Genetic Information Nondiscrimination in Health Insurance Act of 2001

Senator Olympia J. Snowe (R-ME) re-introduced legislation on this topic from the previous Congress as S. 382. The measure would have prohibited:

• Health insurers and group health plans from discriminating against individuals on the basis of predictive genetic information
• Health insurers from adjusting premiums for groups based on predictive genetic information
• Group health insurers from requesting or requiring predictive genetic information concerning an individual or a family member (with the exception that the insurer can request that such information be provided for the purpose of providing health care)

Under the bill, health insurers would have been required to post a notice of the plan's confidentiality practices and establish and maintain safeguards in compliance with the privacy regulations promulgated by the Secretary of HHS.

S. 1995—Genetic Information Nondiscrimination Act of 2002

Senator Snowe introduced new legislation on this topic, which not only contained a revised insurance provision, but also included an employment provision and updated definitions. The bill would have defined genetic information as genetic tests of an individual or family member, or occurrence of a disease or disorder in family members used to predict risk of disease in asymptomatic or undiagnosed individuals. The bill would have prohibited health insurers in both the group and individual market from:

• Using genetic information to impose enrollment restrictions or adjust group premiums
• Making requests for genetic testing or results except as necessary for treatment, payment, or health care operations

With regards to employment, the bill would have granted enforcement powers to the Equal Employment Opportunity Commission. It would have:

• Made it an unlawful employment practice for an employer, employment agency, labor organization, or training program to discriminate against an individual or deprive such 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

Status and Outlook

S. 19 was introduced on January 22, 2001, by Senator Daschle and was referred to the Senate Judiciary Committee.

S. 318 was introduced on February 13, 2001, by Senators Daschle, Christopher J. Dodd (D-CT), Tom Harkin (D-IA), and Edward M. Kennedy (D-MA). It was referred to the Senate Health, Education, Labor and Pensions Committee. Representative Slaughter introduced H.R. 602, the House companion measure, on the same date. H.R. 602 was referred to the House Committees on Education and the Workforce, on Energy and Commerce, and on Ways and Means.

S. 382 was introduced on February 15, 2001, by Senator Snowe. The bill was referred to the Senate Health, Education, Labor and Pensions Committee.

On July 11, 2001, the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education held a hearing on the topic of the genomic revolution. The hearing focused on recent advances in genetic research that will contribute to our understanding of disease and included discussion about genetic discrimination. Francis Collins, Director of the National Human Genome Research Institute, testified at the hearing. On the same day, the House Energy and Commerce Subcommittee on Commerce, Trade and Consumer Protection held a hearing on genetic discrimination.

On July 25, 2001, the Senate Health, Education, Labor and Pensions Committee held a hearing on genetic discrimination in insurance at which Dr. Collins testified. On February 13, 2002, the Committee held a second hearing that focused on issues of genetic discrimination in employment.

S. 1995 was introduced by Senator Snowe on March 6, 2002. The bill, which was cosponsored by all the Republican Members of the Senate Health, Education, Labor and Pensions Committee, was referred to the Senate Health, Education, Labor and Pensions Committee.

There was no further action on this legislation during the 107th Congress.