Coalition for Genetic Fairness - Genetic Nondiscrimination
I attended the Coalition for Genetic Fairness meeting about
the Genetic Information Nondiscrimination Act of 2005 (S. 306)
on February 22, 2005 in Washington, DC. This Act passed in the
Senate on February 14, 2005 by a vote of 98-0. The meeting was
concerned with informing and organizing the participating member
organizations of the Coalition so that each, in turn, can inform
and organize their membership to make contact with persons in
a position to help the House version of the bill win passage
in the House of Representatives.
The Coalition for Genetic Fairness has hired the lobbying firm
of B&D Sagamore to develop and implement a strategy of effective
advocacy in favor of the Genetic Information Nondiscrimination
Act. Members of the Coalition are asked to complete a membership
form and to make a membership contribution (immediately, if
possible) to fund this strategic plan of targeted advocacy.
Francis Collins of the NIH’s NHGRI presented opening
remarks / a “keynote address.” Unfortunately, sometime
after the initial notice of the meeting was sent out, the location
for the meeting was changed from B&D Sagamore Offices at
805 15th Street to the Genetics & Public Policy Center at
1717 Massachusetts Avenue, NW, Suite 530. I learned of the change
only after arriving at the 15th Street offices and had to hail
another cab to travel to the new location. Due to my later arrival,
I missed most Dr. Collins’ remarks, but did hear some
of the questions and his responses.
Frank Swain and Debra Lappin (both of B&D Sagamore) both
spoke about the advocacy strategy and the potential power of
the diverse coalition in terms of numbers and in terms of the
ability to help engage the public and lawmakers (both a “grassroots/grasstops
strategy” as Frank Swain described it).
Sharon Terry, CGF Executive Committee Chair, spoke about membership
in CGF and member organization’s roles and responsibilities.
Members are asked not to act alone, but to be ready to act jointly
as members of a coalition. Direction will come from the offices
of B&D Sagamore and the CGF executive committee. Members
are also asked not to share the strategy in order that it be
most effective when each stage is implemented. CGF bylaws were
distributed. Member organizations were also asked to use their
contacts to bring other non-profits and appropriate organizations
into the Coalition.
I don’t know whether CGREAL intends to become a member
organization of CGF or not. You do have electronic membership
form and the contact is still James O’Leary. I have the
small packet of materials that were distributed containing a
fact sheet, the bylaws, and some of the statements and press
releases made about the Senate’s passage of the Act. I
have also just received 3 emails within the last 24 hours asking
that member organizations begin to contact certain persons as
part of the targeted advocacy for this Act. Please let me know
what you would like me to do. I know that you are supportive
of the Coalition’s position, but I want to honor their
request for confidentiality beyond members of the Coalition.
Reference was made to the following report that may be of interest
to you. “Faces of Genetic Discrimination: How Genetic
Discrimination Affects Real People” 2004 July; 25 p. [Online].
Available: http://www.nationalpartnership.org/portals/p3/library/GeneticDiscrimination/FacesofGeneticDiscrimination.pdf
President’s Council on Bioethics
I attended the first presentation at the PCBE meeting on Thursday,
March 3. The sessions focused on various aspects of “Aging
and Caregiving” and were not directly relevant to CGREAL.
Susan may have something to report from the Friday, March 4
sessions. Topics were “Alternative Sources of Human Pluripotent
Stem Cells” (Council Draft White Paper) and “Human-Animal
Chimeras.”
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