Bill Barring Genetic Bias
Bush has signed into law the Genetic Information Nondiscrimination Act (GINA)
that protects the confidentiality of individual genetic information. Under the
law, "genetic information" is defined to include information about an
individual's genetic tests, genetic tests of family members, and a disease or
disorder in the family. GINA applies to both insurers and employers.
individual health insurers are prohibited from using genetic information to
determine insurance eligibility. Increasing an insurance premium based on
genetic information is also prohibited.
GINA prohibits employers from
discriminating against employees or applicants based on genetic information. The
law applies to all public employers, private employers with 15 or more
employees, employment agencies, and labour organizations.
Both insurers and employers are
prohibited from requesting or requiring individuals to undergo genetic testing.
However, an employer can collect information to monitor the biological effects
of toxic substances in the workplace if: 1) written notice is given to the
employee; 2) the individual gives written informed consent in advance, or the
monitoring is required by law; 3) the individual receives the results; 4) the
monitoring is in compliance with federal or state regulations; and 5) the
employer receives only aggregated monitoring results without information about
specific individuals. There are other exceptions, including one for bona fide
wellness programs that protect individually identifiable information.
GINA also has confidentiality
requirements. Any genetic information that an employer lawfully possesses must
be treated as a confidential medical record. GINA's requirements for
confidentiality are the same as the requirements under the Americans with
Disabilities Act (ADA). Therefore, if employers comply with the ADA 's
confidentiality requirements and keep medical information on separate forms and
in separate medical files, they'll be in compliance with GINA.
Covered employers should update
their nondiscrimination policies to reflect GINA's provisions. In addition,
requests for information from health care providers should be reviewed to avoid
obtaining genetic information from care providers. Specific language that
reminds the provider not to send genetic information can be added, depending on
the type of request.
The law's provisions for insurers take effect in June 2009
and for employers in November 2009.