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Public Policy Web Sites of Interest

 


 

Web Resources with Information on Genetics, Science, and Health Policy Activities

 

APS Guide to Communicating Effectively With Congress
This guide to communicating effectively with Congress was put together by the American Physiological Society (APS), and it features practical tips and advice on communicating science to lawmakers.

 

FASEB Science Advocacy Primer: “Dr. Smith Goes to Washington”
This science advocacy guide was created by the FASEB Office of Public Affairs , and it offers tips on how scientists can convince policymakers to make science funding a priority. Many scientists do not realize they already have the tools to market their research to legislators.

 

The Genetic Alliance has legislative information for genetics advocacy groups on their W eb site. They also send out legislative alerts to their members as issues arise. ASHG is a member organization of the Genetic Alliance.

NHGRI Office of Policy and Public Affairs follows critical issues and legislation surrounding genetics research on both the federal and state levels. ASHG works closely with NHGRI, especially through our Mentor Network and joint ASHG/NHGRI Public Policy Fellowship.

National Conference of State Legislatures (NSCL) is a bipartisan organization dedicated to serving the lawmakers and staffs of the nation's 50 states, its commonwealths and territories. The NSCL W eb site lists state laws and legislative activities, and provides a number of reports and publications.

American Association for the Advancement of Sciences (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 W eb 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 of the AAMC W eb 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 non-profit, non-partisan voice for making medical and health research a higher national priority. Their W eb site has excellent talking points for scientists to use as advocates, as well as information and tips 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 the U.S. 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 NIH National Human Genome Research Institute, 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 is a n online resource from Wellcome-Trust that was created to support education and training around the issues of genetic testing, health information quality, informed choice, and shared decision-making.

 


 

Science, Health, Genetics and Public Policy e-Newsletters

 

FASEB Washington Update is published by the Federation of Societies for Experimental Biology (FASEB) Office of Public Affairs. ASHG is a member society of FASEB. Also see the FASEB Science Advocacy Primer.

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.

CDC Genetics and Disease Prevention Update features weekly scientific and policy updates, primarily related to genetics and public health issues.

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.

National Conference of State Legislatures (NSCL) is a 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:

 


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.

 


 

Federal Government and Legislative Information Web Resources

 

U.S. Legislative Information Systems Web site includes links to current legislative bills, access to committee homepages, information from previous sessions of Congress, and more.

The U.S. 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

U.S. Department of Health and Human Services
(with links to all HHS agencies)

Disability.gov is a comprehensive Federal web site of disability-related government resources.

Office of Civil Rights – HIPAA includes information on 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 and 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 (NBAC) 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 the U.S. Department of Commerce Technology Administration, National Technical Information Service, Springfield, VA 22161; Tel: 1-800-553-6847.

U.S. Office of Science and Technology Policy was e stablished 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 W eb site.

U.S. Government Printing Office (to order publications)

Federal Citizen Information Center offers links to any information you might need to access within and about the U.S. Federal Government (including how to get Presidential Greetings!).

 

Public Agenda is a non-partisan, non-profit public opinion research and citizen education organization based in New York City. The two-fold mission of Public Agenda is to: 1) Help leaders better understand the public's point of view on major policy issues; and 2) help citizens better understand key policy issues so they can make their own informed and thoughtful decisions.

 


 

International Genetics and Public Policy Web Resources

 

Center for Genetics and Society is a non-profit 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 (CDRP) of the Université de Montréal W eb site provides the scientific community, industry, and the public at-large access to a wide range of credible, relevant policy documents from around the world on topics related to human genetics from around the world. This W eb 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 is accessed through the European Union's European Commission, and it contains links to research on the integration of the new genetics and emerging biotechnologies into European society.

 

 

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