approved the Genetic Information Nondiscrimination Act (GINA),
legislation that Senator Edward Kennedy, chairman of the Health,
Education, Labor and Pensions Committee, termed “the first civil
rights bill of the new century of the life sciences.”
The GINA addresses an issue being debated in many countries: the
right of an individual to take advantage of technology that will
determine whether or not they have a genetic predisposition to
serious illnesses such as cancer without fear of discrimination by
health insurers and employers.
With regard to health insurers the GINA will:
• Cover all health insurance programmes,
• Prohibit enrolment restriction and premium adjustment on the
basis of genetic information or genetic services, and
• Prevent insurers and health plans from requesting or
requiring that an individual take a genetic test.
With regard to employment discrimination, the GINA will:
• Prohibit discrimination on the basis of genetic information
in hiring, compensation, and other personnel processes,
• Prohibit the collection of genetic information, and allow
genetic testing only in very limited circumstances, such as
monitoring the adverse effects of hazardous workplace exposures,
• Require genetic information possessed by employers to be
confidentially maintained and disclosed only to the employee or
under other tightly controlled circumstances.