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July 14, 2004 Dear Families of SMA LAC Members and Supporters:
Thanks to the efforts of so many families, SMA continues to have a
strong and effective voice on Capitol Hill. Today we are writing to
update you on two critical efforts.
First, the Labor HHS Bill passed full Committee! This is important
because all indications are that SMA language was included in this bill.
This bill still must be introduced on the House floor and this will not
happen until after Labor Day, we will not have the final language until
that point. I will keep you up-to-date as things progress.
On to the next issue, I have had widespread requests for information
about stem cell research legislation. The issue of stem cells is a
highly controversial one -- but Families of SMA is committed to
providing you with information in order for you to make your own
informed decision.
Representatives Mike Castle (R-DE) and Diana DeGette (D-CO) have
introduced H.R. 4682, the Stem Cell Research Enhancement Act of 2004,
which would expand the federal stem cell research policy. The bill
currently has 99 bipartisan co-sponsors, but Rep. Castle and DeGette
would like to double the number of co-sponsors by the end of this week.
If you are interested in supporting this effort, please call or fax
your representative and urge him or her to co-sponsor H.R. 4682. If your
representative has already co-sponsored the bill, please thank him or
her for doing so. The link below will take you to a page that lists the
members of the House of Representatives by state and their co-sponsor
status for H.R. 4682. Find out whether or not your representative is a
co-sponsor of H.R. 4682 and click on his or her name to get the phone
and fax numbers.
http://capwiz.com/ram/utr/1/NEYADQWWND/IPJPDQXDJY/
If you have further questions, please don't hesitate to contact me. Thank you once again for all your hard work!
Kimberly F. Symonds
FSMA Director of Public Policy
(330) 264-0974- Office
ksymonds@fsma.org
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July 14, 2004 NEW DATABASE FOCUSES ON GENETIC
POLICY AND LAWS
NHGRI Launches Free Web-based Resource For Finding Federal, State
Laws Related to Genetic Issues
BETHESDA, MARYLAND - The National Human Genome Research Institute (NHGRI),
part of the National Institutes of Health (NIH), today unveiled a new
Web-based resource that will enable researchers, health professionals
and the general public to more easily locate information on laws and
policies related to a wide array of genetic issues.
The NHGRI Policy and Legislation Database is located on NHGRI's Web
site at
http://www.genome.gov/LegislativeDatabase . The free, searchable
database currently focuses on the following subject areas: genetic
testing and counseling; insurance and employment discrimination,
newborn screening; privacy of genetic information and
confidentiality; informed consent; and commercialization and
patenting.
"This is a tremendous resource for anyone interested in learning more
about the laws, regulations and policies pertaining to genetics
and genomics. It will serve as a valuable tool for all Americans, from
academic researchers seeking to patent genetic technologies to average
citizens trying to determine what protections exist in their states
against genetic discrimination," said NHGRI Director Francis S. Collins,
M.D., Ph.D.
The resource features a convenient, interactive map of the United
States that enables users to view state legislation and laws for any of
the 50 states and the District of Columbia by simply clicking on that
jurisdiction. Users also can search the database by keyword, content
type, topic and/or source, and can also sort the information by date or
citation. The database, which will be updated on a regular basis,
contains links to full-text copies of federal and state laws/statutes;
federal legislative materials; and federal administrative and executive
materials, including regulations, institutional policies and executive
orders. Abstracts are also provided that summarize the government
materials in lay language.
The new database is managed by NHGRI's Office of Policy,
Communications, and Education (OPCE), which develops policy related to
the societal implications of human genome research. "This database fills
a long-standing need in the genetic policy arena. It is literally a
one-stop shop for anyone with an interest in this rapidly developing
field," said OPCE Director Alan E. Guttmacher, M.D. "We think it will be
of interest to a broad array of users, including legislators and
policymakers at the local, state and federal levels."
In addition to federal and state laws, the database includes
materials from these current and former federal agencies and advisory
panels: Department of Health and Human Services (HHS), the
Department of Health, Education and Welfare, the Equal Employment
Opportunity Commission, the U.S. Patent and Trademark Office, the
Secretary's Advisory Committee on Genetics, Health and Society and the
President's Council on Bioethics.
This fall, NHGRI plans to add more categories of content to the
database, primarily in the areas of foreign statutes and laws,
foreign policy, treaty and international agreements, and policy material
from international organizations. NHGRI is one of the 27
institutes and centers at NIH, an agency of the Department of Health and
Human Services. Additional information about NHGRI can be found at its
Web site, http://www.genome.gov .
This NIH News Release is available online at:
http://www.nih.gov/news/pr/jul2004/nhgri-19.htm
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