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108th Congress
Public Laws | Pending Legislation
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.
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