[tri-med] Genetic Discrimination

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jude, mom to derek-18, kelsey-16
and kameron-7-full t18
golden, colorado usa

Passing on this Information:

Request for Public Comment on Genetic Discrimination

Subject: In an effort to raise awareness on the problem of Genetic
Discrimination, the Secretary's Advisory Committee on Genetics, Health, and
Society is
asking for public comments on the topic.

From: Amanda Sarata, MS, MPH, Secretary's Advisory Committee on Genetics,
Health, and Society

The issue of genetic discrimination is a high priority for the Secretary's
Advisory Committee on Genetics, Health, and Society (SACGHS).  In an effort
to
raise awareness about the problem, the Committee is seeking public comments
from individuals who:
·         Have experienced genetic discrimination in health insurance or in
employment.
·         Fear the potential impact of genetic discrimination on either
health insurance or employment.
·         Have paid out-of-pocket for services to exclude genetic
information
from medical records.
·         Are health care providers and have had patients experience genetic

discrimination; express concern about genetic discrimination; or taken steps

to avoid genetic discrimination (for example, not undergoing genetic testing
or
keeping the results out of a medical record).

SACGHS will be holding a hearing on October 18, 2004 to gather information
from members of the public about the scope and nature of genetic
discrimination.
 The Committee is particularly interested in learning about cases of genetic

discrimination that are based on predictive genetic information,
pre-symptomatic genetic disease, or carrier status.

Please send your written comments by mail, email or fax to SACGHS by
September 17, 2004 in care of: Amanda Sarata, MS, MPH

Secretary's Advisory Committee on Genetics, Health, and Society 6705
Rockledge Drive, Suite 750 Bethesda, MD 20892 301-496-7009 (ph) 301-496-9839
(fax)
sarataa@xxxxxxxxxx

Additional information on Genetic Discrimination

President Bush has called for Federal legislation to prohibit genetic
discrimination in health insurance and employment.  In October 2003, the
Senate
unanimously passed the Genetic Information Nondiscrimination Act, and
advocates are
pressing for action in the House of Representatives. In July 2004, the House

Subcommittee on  employer-Employee Relations of the Committee on Education
and
the Workforce held a hearing on the issue
of genetic discrimination.  In spite of broad bipartisan support for the
legislation, there is opposition and it appears to be preventing further
progress
in the House.  The fear of genetic discrimination and its adverse
consequences
is well-documented and regarded by many as sufficient justification for
Federal legislation.  However, opponents argue that there is insufficient
evidence
that genetic discrimination is occurring and thus legislation is not
warranted
at this time. SACGHS hopes that the information gathered during the hearing
will help address the concerns of the bill's opponents.

SACGHS was established to serve as a forum for deliberation on the ethical,
legal and social issues at the intersection of genetics, health and society
and
to advise the Secretary of Health and Human Services about these issues.
For more information about the Committee and its meetings, as well as copies

of the Committee's correspondence with the Secretary on this issue, please
visit  http://www4.od.nih.gov/oba/SACGHS.HTM

Brad L. Therrell, Ph.D., Director, National Newborn Screening and Genetics
Resource Center, 1912 W. Anderson Ln.,
Austin, Texas 78757, Phone: 512-454-6419      Fax: 512-454-6509, Visit our
website at:  http://genes-r-us.uthscsa.edu/


[Source: Monday Morning in Washington, D.C. - ablekids@xxxxxxxxxxxxxxxx ]


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