Summary of S. 1053

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Summary of Genetic Information Non-Discrimination Act of 2003 (S. 1053)

On October 14, 2003, the U.S. Senate (95-0) passed the Genetic Information Non-Discrimination Act of 2003 (S.1053), prohibiting discrimination on the basis of genetic information in health insurance and the workplace. The U.S. House of Representatives is now considering this legislation.

Definitions

Genetic services refers to a genetic test, genetic counseling (obtaining, interpreting or assessing genetic information) or genetic education.

Genetic test means an analysis of human DNA, RNA, chromosomes, proteins or metabolites that detects genotypes, mutations or chromosomal changes.

Genetic information includes information about an inherited disease in the family, an individual's genetic test results or the individual's family members' genetic test results.

Enrollment Restrictions and Raising Premiums

Group and individual health plans cannot restrict enrollment nor charge higher premiums because of genetic information or genetic services. Additionally, group health plans cannot request or require an individual or family member to undergo a genetic test.

A group health plan, a health insurer or an issuer of a Medicare supplemental policy shall not use or disclose genetic information for purposes of underwriting, determining enrollment eligibility, establishing premiums, or the creation, renewal or replacement of a plan, contract or coverage.

Employer Practices

It is unlawful for employers, employment agencies, labor organizations and training programs to hire or fire anyone because of genetic information. They cannot provide different compensation, terms, conditions or privileges of employment to employees because of genetic information. Additionally, they cannot use genetic information to limit, segregate or classify employees in any way that would deprive them of opportunities.

Under this bill, an employer cannot request, require or purchase genetic information except when the employee provides written authorization. Even when the employer provides the genetic services, only the employee and his or her health care professional can access individually identifiable information obtained from these genetic services. Health care professionals will provide genetic information to an employer in aggregate terms that do not disclose the identity of specific employees.

Employers are permitted to purchase documents containing genetic information that are publicly available. Employers can request or require genetic information to comply with the Family and Medical Leave Act of 1993. An employer is allowed to use genetic information to monitor employees when required by federal or state law, if written notice of the monitoring is provided, the employee gives written authorization, and the employee is informed of the results.

Privacy and Confidentiality

The Genetic Information Nondiscrimination Act extends the same privacy protections outlined in part C of title XI of the Social Security Act and section 264 of the Health Insurance Portability and Accountability Act (HIPAA) of 1996 to the use or disclosure of genetic information. The Act further limits the collection of genetic information prior to enrollment into health plans. These confidentiality standards only apply to insurance plans and insurers covered by the Social Security Act or HIPAA, and to individually identifiable health information as defined in those Acts.

If an employer, employment agency, labor organization or joint labor-management committee possesses genetic information, they must treat this information as part of a confidential medical record and maintain it in separate medical files. Additionally, they cannot disclose genetic information unless requested by the employee or a court order.

If a group health plan, health insurer or an issuer of a Medicare supplemental policy incidentally obtains genetic information when requesting, requiring, or purchasing of other information, they will not be considered as violating this Act.

Enforcement

With respect to any violation of this Act, a participant or beneficiary may seek injunctive relief prior to the exhaustion of available administrative remedies if it is demonstrated to the court that the exhaustion of such remedies would cause irreparable harm to the health of the participant or beneficiary. The recovery of benefits may include an administrative penalty and the retroactive reinstatement of coverage under the plan if their coverage was denied.

An administrator who fails to comply with the requirements may be personally liable for a maximum penalty of $100 for each day in the noncompliance period. The Secretary of Health and Human Services has the authority to impose this penalty.

In the case of noncompliance due to reasonable cause and not due to willful neglect, the penalty imposed will not exceed 10 percent of the sum amount paid by the employer during the preceding taxable year for group health plans, or $500,000. Also in this situation, the Secretary may waive part or the entire penalty imposed if the penalty would be excessive relative to the failure involved.

Effective Date

This law would take effect 18 months after it is enacted. Within a year after enactment, the Secretary of Labor, the Secretary of Health and Human Services and the Secretary of the Treasury shall issue final regulations.

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Last Reviewed: March 17, 2012