Research
Ethics
Genetics/Genomics
AAAS/Hastings Center Behavioral Genetics Project. - Two books, Wrestling with Behavioral Genetics and Behavioral Genetics are publications from the Behavior Genetics Project (2004). The most recent book focuses on ethical, social and legal issues and the earlier one on the science
Bioethics.net – This Resource page links to sites on gene environment effects, ethical and genetics, cloning and gene patenting.
CDC Public Health Genomics - This site summarizes CDC’s activities in genomics and public health. It includes annual reports as well as the report Genomics and Population Health (2003) summarizing knowledge and opportunities in genomics and public health. Chapter 8 deals with ethical, social and legal issues. Public Health Genomics, a 2006-2007 report can also be accessed at this site.
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. Site lists publications, conferences and research projects.
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.
Genome.gov - This NIH site contains links to scientific information and ethical, legal and social aspects of human genetics and genomics research. It links to other government and non-government sites. ELSI Research Program - The site links to active grants on ethical, legal and social aspects of genetics research and to the major research programs supported by the National Human Genome Research Institute (NHGRI).
Genomics at the FDA - Site includes information about genomics programs at FDA and an article directed at consumers that explains the potential benefits and challenges of genomic medicine.
Genome-Wide Association Studies – A NHGRI site that provides basic information about GWAS, e.g. what they are, now they are done, what has been found, the potential contribution to knowledge of GWAS and NIH GWAS initiatives.
Genome-Wide Association Studies (GWAS) – This site provides an overview of GWAS. They are designed to identify common genetic factors that influence health and disease. An NIH policy for a centralized NIH GWAS data repository is proposed..
Issues Associated with Undertaking a New Large U.S, Population Study of Genes, Environment ,and Disease - The Report identifies five areas that require further analysis and consideration by the Secretary, DHHS prior to making a decision as to whether a new large population study could take place: research policy; research logistics; regulatory and ethical considerations; public health, social, and economic implications; and public engagement. The report concludes that the Secretary should initiate a thorough consideration of policy issues outlined in the report and that there should be broad stakeholder involvement in the process.
National Institutes of Health Fact Sheet Genome Wide Association .Studies – Introductory document that defines GWAS and outlines NIH’s proposed policy for such studies.
Pharmacogenetics: Draft Report from Secretary's Advisory Committee on Genetics, Health and Society (June 2007) – This draft report addresses scientific and public health opportunities promised by pharmacogentics. Ethical issues raised include protection of personal information, informed consent, liability for developers, disparities in access to care, stigma and discrimination, and liability for health care providers.
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 – A NHGRI site with information focused on genetic health issues.
Roadmap for the Integration of Genetics and Genomics into Health and Society: Priorities of the Secretary’s Advisory Committee on Genetics, Health and Society (June, 2004) - An advisory committee report setting priorities to integrate genetic and genomic information into health care.
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.
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 Resources on the Web (GROW) - Encourages communication and collaboration among individuals interested in web-based information about human genetics, especially those aspects of human genetics dealing with health.
The Council for Responsible Genetics - Publisher of GeneWATCH, a national bulletin on the implications of biotechnology. 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 is designed for educators interested in human genetics and the human genome project. This site links to other current information.
Genome Technology and Reproduction: Values and Public Policy and Communities of Color & Genetics Policy Projects - The University of Michigan, Michigan State University Center for Ethics and Humanities in the Life Sciences and Tuskegee University National Center for Bioethics in Research and Health Care have joined together for these two projects, designed to provide policy recommendations based on public perceptions and responses to the explosion of genetic information and technology.
Genethics – A site administered by Dr. William-Jones at Universite de Montreal who 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.
The Center for Bioethics and Human Dignity – This site links to resources and podcasts on many topics, including genetics.
National information Data Base on Ethics and Genetics. A database maintained by Georgetown University Kennedy Institute. The National Information Resource on Ethics & Human Genetics, funded by the NHGRI, NIH, supports information services - for example, bibliographic databases searchable via the Internet, the full text of online annotated bibliographies, and print publications - 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 the NHGRI. Information Services staff members track government policy and provide specialized reference services to other Centers.
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.
Genetics and the Law: Council for Responsible Genetics - This website provides introductory and detailed educational materials on legal issues in genetics; comprehensive surveys of state and federal laws, and court decisions relevant to genetic information; analytical reviews and articles by experts in the field; and links to other sites with related information.
DNA Testing, Banking, and Genetic Privacy (2006) An article that addresses commercial availability of DNA testing and cautions consumers about the absence of property or privacy protection of DNA samples.
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 19 October 2005. The page links to several reports, ethics education programs, and UNESCO activities in ethics and bioethics.
Bioethics and Human Population Genetics Research (1995) - This UNESCO report examines the ethical issues of population genetics, their philosophical basis, their research methodologies, the possible uses of research results and the need for education to address fears of stigmatization and discrimination.
The Human Genome O rganisation (HUGO) – The international organization of scientists involved in the Human Genome Project (HGP), the global initiative to map and sequence the human genome. 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.
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. Several reports are linked to each topic.
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.
Genetics and Human Behavior: the Ethical Context (2002) – A report published by the Nuffield Council on Bioethics considers the ethical, legal and social issues that are raised by research on behavioral genetics. It focuses on human behavior within the normal range of variation, looking at traits such as intelligence, antisocial behavior, personality and sexual orientation.
Centre for Economic and Social Aspects of Genomics - Describes programs that bring together natural and social scientists to investigate social, economic and ethical aspects of genetics and genomics. The site links to resources and to the Centre’s research projects.
The Genetic Age Festival - The Royal Institution of Great Britain, June 2 & 3, 2004.- A series of webcast discussions on various issues involving genetic science and its applications.
The Genetic Age: Science Funding, Organization, Regulation and Application to Human Health February 18, 2005 – A webcast symposium about the promise of genetics research for health care.
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.
Human Bioethics Today – This site is developed by the Ethox Centre, University of Oxford with university and foundation partners to bring together ethical, medical, legal, social science perspectives on genetic bioetechnology. The site links to general genetics information as well as to resources on cloning, stem cells, behavior genetics, genetic testing, screening and counseling, pharmacogenetics and databases..
