Federal Resources
NHGRI Online Bioethics Resources - This NIH site contains links to resources on the ethical, legal and social aspects of human genetics and genomics research. It links to other government and non-government sites, including the National Human Genome Research Institute (NHGRI) ELSI Research Program. The ELSI site links to active grants on the ethical, legal and social aspects of genetics research and to the major research programs supported by NHGRI.
Secretary’s Advisory Committee for Genetics, Health, and Society (SACGHS) – An advisory committee for DHHS, this site includes links to official SACGHS reports and other documents produced by the Committee.
CDC Public Health Genomics - This site summarizes CDC’s activities in genomics and public health. It includes annual reports as well as the 2003 Genomics and Population Health report, summarizing knowledge and opportunities in genomics and public health. Chapter 8 deals with ethical, legal and social issues.
Ethical, Legal and Social Issues - Genome Research – A DOE site that includes ethical, legal and social issues raised by the Human Genome Project and links to other resources.
Genetics Home Reference - This site, sponsored by the National Library of Medicine, provides access to a broad range of information about genetic science and genetic diseases and conditions. The Resources link has a section on Policy and Ethics as well as links to other resources. The Handbook also links to ethics issues.
Genomics at the FDA – This site includes regulatory and scientific information and a set of genomics FAQs.
Genome-Wide Association Studies (GWAS) – An NHGRI site that provides basic information about GWAS, e.g. what they are, how they are done, what has been found, the potential contribution to knowledge of GWAS and NIH GWAS initiatives.
Genome-Wide Association Studies – An OER site that provides an overview of GWAS. They are designed to identify common genetic factors that influence health and disease.
Human Genome Project Information from the Department of Energy (DOE) - Features an extensive list of links on the HGP, including the progress and goals of the HGP and information for educators and students.
NIH GWAS Proposed Policy Fact Sheet – An introductory document that defines GWAS and outlines NIH’s proposed policy for such studies.
Points to Consider When Planning a Genetic Study that Involves Members of Named Populations – An NIH paper that discusses the importance of community consultation when planning genetics studies, particularly with identifiable populations.
Policy and Ethics: Critical issues and legislation surrounding genetic research – An NHGRI site with information focused on genetic legislation.
Academic and Non-Government Organizations
Bioethics.net – This page links to sites on genetics and the environment, ethics and genetics, gene patenting and gene transfer research, among others.
The Center for Bioethics and Human Dignity – This site links to resources and podcasts on many topics, including genetics.
The Council for Responsible Genetics – Publisher of GeneWATCH, a national bulletin on the implications of biotechnology. This site contains testimony presented to U.S. Congress, position papers, and a legislative clearinghouse. The Projects and Programs sections on the site include bibliographies and material on several genetics-related topics.
The Genetics and Public Policy Center – The Center helps policy leaders, decision makers, and the public to understand human genetics and its application to healthcare. The Center surveys public attitudes about genetics issues, conducts analyses of the regulatory landscape, monitors the transition of genetic applications into clinical practice, and posits options and likely outcomes of key genetics policies.
Genetics Education Center – A University of Kansas Medical Center site that is designed for educators interested in human genetics and the human genome project.
The Human Genome Organisation (HUGO) – HUGO was established in 1989 by a group of genome scientists to promote international collaboration within the project. The link includes access to lectures and PowerPoint presentations, some of which focus on ethical issues.
National Information Data Base on Ethics and Genetics. A database maintained by the Georgetown University Kennedy Institute. The National Information Resource on Ethics & Human Genetics, funded by NHGRI supports information services on topics related to ethics and human genetics. The Kennedy Institute (KI) is participating in Centers for Excellence in Ethical, Legal and Social Implications Research (CEER) funded by NHGRI. Information Services staff members track government policy and provide specialized reference services to other Centers.
Stanford’s Center for Integrating Research on Genetics and Ethics – This is the site of an NHGRI-supported center to proactively identify and consider ethical, legal and social issues in emerging genetics research. The site lists publications, conferences and research projects.
International Organizations and Resources
The Danish Council on Ethics – This site links to publications on topics such as Genetic Engineering and Cloning and Patenting Human Genes and Stem Cells.
The Human Genome – This Wellcome Trust site includes basic educational information, news, a section on genetics and society and several papers and reports on ethical issues and genetics.
Nuffield Council on Bioethics – This site includes links to several publications on ethics and genetics, including reports on pharmacogenetics, genetics and human behavior, gene patenting and genetic screening, among others.
UNESCO Social and Human Sciences: Ethics – The Organization’s first success in bioethical standard-setting was the Universal Declaration on the Human Genome and Human Rights, adopted by UNESCO’s General Conference in 1997 and endorsed by the United Nations General Assembly in 1998. This was followed by the International Declaration on Human Genetic Data, adopted in 2003. The Universal Declaration on Bioethics and Human Rights is the third standard-setting text on bioethics, adopted by UNESCO’s 33rd General Conference, on October 19th, 2005. The page links to several reports, ethics education programs, and UNESCO activities in ethics and bioethics.
Other Resources
AAAS/Hastings Center Behavioral Genetics Project – Wrestling with Behavioral Genetics and Behavioral Genetics are publications from the Behavior Genetics Project (2004). These publications focus on the ethical, legal and social issues of behavioral genetics and the science of behavioral genetics, respectively.
Genetics Resources on the Web (GROW) – GROW seeks to provide an effective forum that encourages communication and collaboration among individuals interested in web-based information about human genetics, especially those aspects of human genetics dealing with health.
Genethics – A site administered by Dr. William-Jones at Université de Montréal which addresses social, ethical and policy issues on a broad range of genetics-related topics. Links to journals, news and discussion pages as well as to specific topics.
Genomics, Society and Policy – This is a peer reviewed on-line journal that publishes interdisciplinary research on the social, ethical and legal aspects of genomics and related technologies such as nanotechnology and stem cell research.
State Genetic Privacy Laws - This site tracks genetic privacy laws by state. A concise summary of laws is included. The table on the site looks at consent requirements for genetic testing, accessing genetic information, retaining genetic information and disclosing genetic information. It also covers whose property genetic information is and any penalties for violations of state genetic privacy laws.
