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Public Policy Web Sites of Interest
Web Sites Providing Information about
Genetics, Science and Health Policy
Activities
The Genetic Alliance has legislative
information on their web site. They also
send out legislative alerts to their
members, as issues arise. ASHG is a member
organization of the Genetic Alliance.
NHGRI's Office of Policy and Public Affairs
follows critical issues and legislation
surrounding genetics research, on the
federal and state levels. ASHG works closely
with NHGRI, especially through our Mentor
Network.
Secretary's Advisory Committee on Genetics,
Health and Society (SACGHS), chartered in
late 2002, is an expansion of the
Secretary's Advisory Committee on Genetic
Testing. Their charge is to more broadly
consider the impact of genetic technologies
on society.
National Conference of State Legislatures (NCSL)
is a bipartisan organization dedicated to
serving the lawmakers and staffs of the
nation's 50 states, its commonwealths and
territories. The web site lists state laws
and legislative activities, and provides a
number of reports, and publications.
American Association for the Advancement of
Science (AAAS) is the world's
largest general scientific society. AAAS
strives to advance science and innovation
throughout the world for the benefit of all
people by: creating opportunities for
communication between and amongst scientists
and the public; enhancing science education;
strengthening the science and technology
workforce and infrastructure; promoting
scientific integrity; and advocating for
support of the science and technology
enterprise.
American Medical Association (Medical
Science) Genetics and Molecular Medicine web
site contains information on advocacy,
genetics education, genetics in public
health and applied genetics.
Association of American Medical Colleges is
a non-profit association representing the
nation's accredited medical schools, major
teaching hospitals, more than 105,000
faculty in 98 academic and scientific
societies, and the nation's medical students
and residents. AAMC fosters improvement of
the nation's health through the advancement
of medical schools and teaching hospitals by
working with its members to set a national
agenda for medical education, biomedical
research, and healthcare. The Government
Affairs section on this web site includes
information about medical privacy and the
Report of the Task Force on Financial
Conflicts of Interest. ASHG is a member of
AAMC's Council of Academic Societies (CAS).
Research!America is the nation's leading
nonprofit, non-partisan voice for making
medical and health research a higher
national priority. This web site has
excellent talking points for scientists to
use as advocates, as well as hot links that
provide information about working with
legislators and the media. ASHG is one of
Research!America's member organizations.
The Genetics and Public Policy Center
is an
independent and objective source of credible
information on genetic technologies and
genetic policies for the public, media and
policymakers. Established in mid-2002, the
goal of the Center is to create the
environment and tools needed by key decision
makers in both the private and public
sectors to carefully consider and respond to
the challenges and opportunities that arise
from scientific advances in genetics. The
Center's first Initiative is in Reproductive
Genetics, and includes social science
research to discern what people know and how
they feel about reproductive genetic
technologies. The Center is funded by The
Pew Charitable Trusts, and is part of The
Phoebe R. Berman Bioethics Institute at
Johns Hopkins University.
National Academy of Sciences (NAS) was
established by Congress to advise the
government in scientific and technical
matters. The National Academy of
Engineering, the National Research Council
and the Institute of Medicine (IOM) join the
National Academy of Sciences to form the
National Academies.
National Organization for Rare Disorders
(NORD) has a number of policy and positions
papers posted on their web site. Topics
include gene patents and genetic
discrimination.
National Reference Center for Bioethics
Information provides on-line access to the
National Bioethics Advisory Commission (NBAC)
digest, bibliographic and electronic
resources, teaching materials and links to
bioethics organizations, and the National
Information Resource on Ethics & Human
Genetics (NIREHG). The NIREHG, funded by the
National Human Genome Research Institute,
National Institutes of Health supports
information services, such as bibliographic
databases searchable via the Internet, the
full text of online annotated
bibliographies, and print publications,
related to ethics and human genetics.
DISCERN-Genetics.org An online
resource from Wellcome-Trust that was
created support education and training
around the issues of genetic testing,
health information quality, informed
choice and shared decision-making.
Electronic Communications Related to
Science, Health, Genetics and Public Policy
FASEB Washington Update
American Health Line is a daily news
briefing on health care policy and politics,
with excellent coverage of genetics issues.
There is a cost for this service, but free
trial subscriptions are available.
Genetics and Disease Prevention Update
from CDC features weekly scientific and
policy updates, primarily related to
genetics and public health.
Coalition for Genetic Fairness sends out
electronic alerts about activities
surrounding national genetics privacy and
genetic non-discrimination legislation.
The Alliance for Human Research Protection (AHRP)
is a watchdog organization that monitors
oversight, regulatory and funding issues
related to research involving human
subjects. They send out e-mail alerts to all
federal decision-makers involved with these
issues.
Institute of Medicine (IOM) provides
objective, timely, authoritative information
and advice concerning health and science
policy, which is frequently disseminated
through reports from expert panels.
National Conference of State
Legislatures (NSCL)
NSCL is an bipartisan
organization that serves the legislators
and staffs of the nation's 50 states. NCSL provides research, technical
assistance and opportunities for
policymakers to exchange ideas on the
most pressing state issues – including
healthcare and legislation issues that
are relevant to human genetics. Their
genetics resources include:
Websites Providing Federal Government and
Related Legislative Information
Legislative Information Systems
(includes current bills, access to committee
homepages, information from previous
sessions of Congress, and more.
Federal Register: The Federal Register is
the official daily publication for Rules,
Proposed Rules, and Notices of Federal
agencies and organizations, as well as
Executive Orders and other Presidential
Documents. Volumes 60 – 67 (1995-2002) are
available online via GPO Access
United States Senate
United States House of Representatives
Library of Congress
The White House
Department of Health and Human Service
(with links to all HHS agencies)
DisabilityInfo.gov is a comprehensive
Federal web site of disability-related
government resources.
The NIH Office of Extramural Research,
with its longstanding interest in
objectivity in research and
financial
conflict of interest, has developed a web
site to provide up-to-date information on
this important topic. Posted on this site is
the February 2003 publication, "Financial
Conflict of Interest – Objectivity in
Research: Institutional Policy Review,"
which examined the over 100 financial
conflict of interest policies obtained from
a breadth of institutions receiving
extramural research funding.
Office of Civil Rights – HIPAA
(includes Medical Privacy, National
Standards to Protect the Privacy of Health
Information, and HHS Final Changes to
Privacy Rule of 8/9/02 that Protects
Privacy, Access to Care)
The President's Council on Bioethics
advises the President on bioethical issues
related to advances in biomedical science
and technology
National Bioethics Advisory Commission ended
its charter in October 2001. Materials on
the former NBAC web site can be accessed
through the National Reference Center for
Bioethics Information. Hard copies of NBAC
reports are available through: U.S.
Department of Commerce Technology
Administration,
National Technical
Information Service, Springfield, Virginia
22161; 1-800-553-6847
Office of Science and Technology Policy:
Established by Congress in 1976 with a broad
mandate to advise the President and others
within the Executive Office of the President
on the impacts of science and technology on
domestic and international affairs. The
President's Committee of Advisors on Science
and Technology (PCAST) and the President's
National Science and Technology Council (NSTC)
are also supported through OSTP and
accessible through its web site.
Government Printing Office (to order
publications)
Federal Citizen Information Center anything
you might need to access within and about
the Federal Government, including how to get
Presidential Greetings!)
International Information about Genetics and
Public Policy
Center for Genetics and Society is a
nonprofit information and public affairs
organization that encourages responsible
uses and effective societal governance of
the new human genetic and reproductive
technologies, both domestically and
internationally. Working with a network of
scientists, health professionals, civil
society leaders, and others, The Center
supports benign and beneficent medical
applications of these technologies, and
opposes applications that objectify and commodify human life and threaten to divide
human society. A newsletter is available, as
are policy documents (including such topics
as human reproductive cloning and
inheritable genetic modification) from other
nations, and over a half dozen international
bodies.
Centre de Recherche en Droit Public (CRDP)
of the Université de Montréal web site
provides the scientific community, industry,
and the public at-large access to a wide
range of credible, relevant policy documents
on topics related to human genetics, from
around the world. This web site includes
several modules: 1) GenConnect, which links
you over 300 to policy making organizations
that have addressed ethical, legal and
social issues raised by human genetics
research; 2) GenBiblio which allows you to
design bibliographies using keywords and
jurisdictions; and 3) GenInfo which
regularly summarizes new developments, and
includes an e-newsletter to which you can
subscribe.
European Society of Human Genetics (ESHG) is
the European equivalent of ASHG, bringing
together researchers, clinicians, laboratory
scientists, social scientists, bioethicists,
and other involved in all aspects of human
genetics including. Active committees on
Public and Professional Policy and European
Union Affairs have drafted a number of
documents that respond to social ethical and
public policy issues. These are available on
the ESHG home page.
Genetics and the Future of Europe, accessed
through the European Union's European
Commission, contains links to research on
the integration of the new genetics and
emerging biotechnologies into European
society.
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