In trying to research whatever happened to Senate Bill 1416, cited as the
Genetic Privacy and Nondiscrimination Act of 1995, which would counteract
this Nebraska nonsense, I ran across a newsletter entitled Oklahoma
Disability Report which had the following in its Set issue. It may offer
to you positive steps to champion instead of lamenting negative steps as I
sometimes do.
Several bills have been introduced in Congress during the last year to
address the potential misuse of genetic information about a person for
purposes that are discriminatory. The bills include:
S-1898 (Domenici, R-NM), the Genetic Confidentiality and Nondiscrimination
Act of 1996. The bill is intended to protect the genetic privacy of
individuals. It addresses collection, storage and analysis of DNA samples;
disclosure of genetic information; discrimination in employment and
insurance; and related issues. On 6-24-96 S-1898 was referred to the Senate
Committee on Labor and Human Resources.
S-1600 (Feinstein, D-CA) is the Genetic Fairness Act of 1996 and it was
introduced 3-7 96. The bill is intended to establish limitations on health
plans with respect to genetic information. It prohibits health insurance
plans from discriminating against a person or family member on the basis of
genetic information. Health insurers are also prohibited from requiring a
genetic test or asking questions relating to genetic information. These
provisions would be enforced by state insurance commissioners, the Secretary
of Health and Human Services and through private actions. S-1600 is in the
Senate Committee on Labor and Human Resources.
S-1694 (Snowe, R-ME) is the Genetic Information Nondiscrimination and Health
Insurance Act of 1996. Introduced 4-23-96, the bill is intended to prohibit
insurance providers from denying or canceling health insurance coverage, or
varying the premiums, terms of conditions for health insurance coverage, on
the basis of genetic information or a request for genetic services.
Enforcement would be by the Secretary of Labor regarding employee health
benefit plans, and by state insurance commissioners in certain other cases.
The bill provides for a private right of action. It also allows a state to
establish or enforce requirements only if they re more restrictive than this
Act. S-1694 is in the Senate Committee on Labor and Human Resources.
HR-2482 (McDermott, D-WA), the Medical Privacy in the Age of New
Technologies Act of 1996. The bill establishes the term "Health Information
Trustee" HIT), to mean a person or entity that creates, receives, obtains,
maintains, uses or transmits protected health information (PHI). Any HIT
must permit an individual bout whom information has been collected to
inspect and copy the information. The HIT must apply confidentiality and
accuracy safeguards with regard to any potected health information.
Disclosure of the information would generally be prohibited, except under
certain conditions.
This bill also deals with the conditions under which genetic and other
health information may be disclosed and to whom. Penalties are provided for
failure to abide by the Act.
S-1416 (Hatfield, R-OR) is the Genetic Privacy and Nondiscrimination Act of
1995. On 11-15-95 it was referred to the Senate Committee on Labor and
Human Resources, where it remains. The bill prohibits disclosure of genetic
information about a person unless specifically authorized by the person or
his or her legal representative, in writing. It allows disclosure of such
information if authorized under federal or state criminal laws relating to
the identification of individuals, or as is necessary for the purpose of a
criminal or death investigation. Such information could also be shared if
required by special order of a federal or state court or if laws allow such
disclosure for the purpose of establishing paternity.
The bill prohibits any employer from seeking to obtain, obtaining or using
the genetic information of an employee or a prospective employee, or
requiring a genetic test, to distinguish between or discriminate against
such individuals or individual. Insurance companies are also prohibited
from using genetic information to reject, deny, limit, cancel, refuse to
renew, increase the rates of, or otherwise affect health insurance. The
measure further requires that if an insurer requests that an applicant other
than a health insurance applicant take a genetic test, that the applicant
must be told the use or results of such test. The applicant must provide
written authorization for such disclosure. Insurers cannot use such genetic
tests as an inducement for the purchase of insurance.
This bill also directs the National Bioethics Advisory Commission to make
recommendations to Congress on development of appropriate standards to
provide increased protection for the collection, storage and use of
identifiable DNA samples and the genetic information obtained from those
samples.
HR-2690 (Stearns, R-FL) would establish limitations with regard to the
disclosure and use of genetic information. It closely resembles the
Hatfield legislation. On 11-29-95 it was referred to the House Committee on
Commerce, the Committee on Educational and Economic Opportunities, and the
Committee on Government Reform and Oversight.
HR-2748 (Slaughter, D-NY) is the Genetic Information Nondiscrimination and
Health Insurance Act of 1995. In December of 1995 it was referred to the
House Committee on Commerce and the Committee on Economic and Educational
Opportunities.
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