The United States Congress is currently
considering legislation that would prohibit insurers and employers
from discriminating against Americans based on genetic information
about themselves or their family members.
For the past six years, legislation has been introduced in Congress to address
genetic information discrimination. On February 7, 2005, Senator Olympia
Snowe (R-ME) re-introduced S. 306, the Genetic Information Nondiscrimination
Act, which was passed by the Senate Committee on Health Education,
Labor and Pensions (HELP). On February 17, 2005 S. 306 unanimously
passed the Senate by a 98-0 vote.
On March 10, 2005, Representatives
Judy Biggert (R-IL) and Louise Slaughter (D-NY) re-introduced the Genetic
Information Nondiscrimination Act, H.R. 1227. The House bill is identical
to the Senate passed version. The bill has been referred to three committees
– the Committee on Education and the Workforce (primary jurisdiction),
the Committee on Energy and Commerce and the Committee on Ways and
Means. None of the House Committees have taken any action on the bill.
The Genetic Information Nondiscrimination
Act protects individuals from discrimination in health insurance policies
and employment on the basis of their genetic information. This protection
aims to help reduce concerns about the potential for discrimination
in hiring and in availability and costs of health insurance, and encourages
individuals to take advantage of genetic testing, new technologies
and therapies and participate in genetic research.
This legislation amends the Employee
Retirement Income Security Act of 1974 (ERISA) and the Public Health
Services Act (PHSA) by prohibiting health insurance issuers from:
- Adjusting premiums on the basis of genetic information;
- Requesting or requiring an individual or a family member of an individual
to undergo a genetic test; and
- Using or disclosing genetic information for purposes of underwriting
or determining enrollment eligibility.
This would apply to employer-sponsored
group health plans, health insurance issuers, Medigap, and state and
local non-federal governmental plans as well as others.
Protection under this law applies
to everyone regardless of whether a person is currently sick, disabled
or currently healthy. If found in violation of this law, fines would
range from $2,500 - $500,000 and up to ten years in prison depending
on the severity of the violation.
The second part of the legislation
protects employees from having genetic information used against them
- Prohibiting employers, including employment agencies and labor organizations,
from “requesting or requiring” genetic testing of an individual or
- Prohibiting employers from using genetic information to make hiring
or promotional decisions, or when determining eligibility for training
Employers are prohibited from requesting,
requiring, or purchasing genetic information about an employee or family
member, except for the following legitimate reasons:
- For genetic monitoring of biological effects of toxic substances
in the workplace;
- If the employer provides genetic services such as through a wellness
program, with the employee’s prior consent;
- For compliance with the Family and Medical Leave Act; or
- The purchase of commercially and publicly available documents or
inadvertently requesting or requiring family medical history would
not violate this title.
However, under each of the above
exceptions a person’s genetic information still could not be used or
Privacy protections currently established
in the 1996 Health Insurance Portability and Accountability Act (HIPAA),
Americans with Disabilities Act and the Civil Rights Act only touch
on the issues raised by the misuse of genetic information. The Genetic
Information Nondiscrimination legislation provides comprehensive and
consistent protections against a person’s genetic information from
employers and insurers.
Genetic Information – Is defined
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 and specifically
exclude information about an individual’s sex or age.
Genetic Tests – The legislation
defines a genetic test as an analysis of human DNA, RNA, chromosomes,
proteins, or metabolites that detects genotypes, mutations, or chromosomal
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