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Launched in April 2003, this site outlines the Aga Khan University’s activities in medical and research ethics, and includes information about the research ethics committee, hospital ethics committee and bioethics group. Following receipt of a two-year developmental grant from the Fogarty International Centre / US National Institute of Health, the "Pakistan Bioethics Programme: Gateway to the Islamic World" is being developed. Plans are underway to offer a Masters in Bioethics, as well as certificate courses in research ethics, clinical ethics, bioethics education, and health equity, policy and ethics.
AEGiS, a non-profit organization that is a web-based reference for HIV/AIDS information. AEGiS is a virtual HIV/AIDS library containing reference materials and late-breaking information from HIV/AIDS-specific publications and news sources from around the world. The site disseminates and archives information daily, offers e-communication lines, such as an Ask the Doc forum and documents pandemics via global historical database.
This HIV/AIDS web portal of the American Association for the Advancement of Science (publisher of Science) ceased operating in December 2003, but remains an important archive of documents relating to AIDS prevention, treatment and vaccine development. The
International AIDS Vaccine Initiative has taken over the role of reviewing and highlighting recently published scientific literature.
Aidspan is a relatively new independent non-profit organisation based in New York that provides critical analysis, news and comment on the activities of the Global Fund. It publishes a regular newsletter, the
Global Fund Observer, and guidance to developing countries on how to apply for Global Fund support for HIV/AIDS projects.
The Alliance is an initiative of the Global Forum for Health Research in collaboration with the World Health Organisation and has 310 members in over 70 developing countries. Concerned with the effectiveness of health policy and systems research, the Alliance recognises that health systems currently vary greatly in their performance. It considers that there is an urgent need to improve understanding about how societies organise themselves to achieve health goals, including how they plan, manage and finance activities to improve health, the roles played by different actors in these efforts, and the need to provide scientifically sound, socially relevant and ethically acceptable guidance. The site links to a number of useful resources, including relevant reports, the online international journal for equity in health and online tutorials.
The Alliance for Microbicide Development brings together pharmaceutical companies, non-profit research institutions and advocacy groups dedicated to the development of topical microbicides. A major highlight of its website is the new
Microbicides Research and Development Database. This contains detailed information on the status of individual microbicide products, principle investigators and trial locations. (Free registration is needed for access, and some information is restricted). There is also an excellent weekly digest of news relating to microbicides reserach and development, and the
Microbicide Quarterly, which has meeting reports, interviews and expert-authored articles on all areas from basic research to clinical and regulatory issues.
This up-to-date and comprehensive website from the American Journal of Bioethics covers a wide range of issues in bioethics, including articles on research ethics. The site is very useful for monitoring current controversies and developments but other links provide more useful resources specifically related to research in developing countries (such as the list of
educational resources).
BioethicsWeb, an initiative of the Wellcome Trust, was launched in July 2003 and contains annotated links to hundreds of sites related to biomedical ethics. In addition to research ethics, topics covered include cloning, animal research, genetically modified foods, biotechnology, scientific misconduct and genetic testing. Categories of particular relevance to research ethics include "ethics: theory and concepts" and "research conduct". Much of the material on this extensive and useful site comes from Europe and North America, but material from developing countries is also linked to where available.
BioMed Central is an independent publishing house committed to providing immediate free access to peer reviewed biomedical research. This site provides links to BMC's articles on medical ethics, some of which relate to developing countries (prospective authors can submit their articles for peer review and publication). Other relevant journals on the site include BMC International Health and Human Rights and the International Journal for Equity in Health. One
linked site, provided by the West African Doctor's network, allows researchers in developing countries to conduct searches of PUBMED via email.
This site is a useful source of information about CIOMS, which is an international, non-governmental, non-profit organisation established jointly by the WHO and UNESCO in 1949. CIOMS has contributed to the field of bioethics by issuing international guidelines for the application of ethical principles in various key areas. Copies of CIOMS publications and guidance are available on the website.
The Council for Responsible Genetics, founded in 1983, is a US-based non-profit organisation of concerned citizens, including scientists, environmentalists, public health advocates, physicians, and lawyers. CRG advocates socially responsible use of new genetic technologies by encouraging informed public debate about their social, ethical, and environmental implications. While the news articles and some links to reports are freely available, several reports require payment. CRG also publishes a bimonthly magazine called 'GeneWatch'.
The US Department of Energy's genome site provides information about US involvement in the Human Genome Project (HGP). The website includes basic information about the
HGP,
educational resources and a section on
Ethical, Legal and Social Issues (ELSI), There is also information about the
GTL (formerly Genomes To Life) programme, which will explore practial applications of genomic information.
The Center for Genome Ethics, Law, & Policy - part of Duke University's Institute for Genome Sciences and Policy - was created to foster ethically responsible and socially beneficial uses of genome science, while addressing the complex ethical, legal, social and policy impacts of the genome revolution.
Family Health International — a non-profit organisation based in the United States — works to improve reproductive and family health around the world. They have put together a substantial research ethics training curriculum, which contains a discussion of basic prinicples and case studies. Once the curriculum has been completed (an estimated 4 hours) researchers have the opportunity to take at test and receive a certificate of completion. The online version of the curriculum is available in
English,
French, and
Spanish.
This website offers information on a programme at the Harvard School of Public Health. It includes material on the principles of research ethics, informed consent, responsibilities to the study community, mechanisms of approval and the role of funders. Also available are a selection of case studies, an email discussion group, and links to a useful
selection of readings on research ethics.
HAVEG has been established to conduct research on the ethical aspects of HIV vaccine research. This useful website provides information about the group's past and future studies. It also includes summaries of HAVEG’s activities in training, debate and consensus building, guideline development and work with the Ethics, Law and Human Rights working group of the African AIDS Vaccine Programme. Links are provided to HAVEG publications and to other organisations with relevant ethics resources.
This web portal was developed by the Bioethics Division of the Faculty of Health Sciences at Witwatersrand University, South Africa. Lack of funding means the site is no longer updated, although remains a comprehensive resource on HIV/AIDS, and ethics/law/policy in developing countries. The section on
AIDS trials contains information about guidelines, ethical concepts, drug availability, standards of care, vaccine research, ethics review, researcher and research participants. Other sections cover drug prices, resource allocation, healthcare professionals, communities, patients, research papers and legal issues. The site also contains daily news through links to articles about HIV/AIDS published in a range of periodicals.
The ICRW is a US/India-based non-profit organisation that is engaged in policy, advocacy, technical support and research on women's issues. Its website has a special section on
HIV and development.
This site provides free access to the full text of the journal of the Indian Forum for Medical Ethics Society. Over 30 issues of the journal are available on the website, from 1993 onwards. In addition to orginal articles, the journal contains discussion pieces, letters, book reviews, case studies, reviews and meeting reports, with special reference to developing countries. As well as articles discussing ethical concerns in medical research, the journal also contains articles on clinical practice and other issues in medical ethics. Topics of particular relevance include discussions of national and international research ethics guidelines, informed consent and the ethical review of research.
UNAIDS is the main advocate for global action on HIV/AIDS, bringing together the expertise, resources and influence of its joint organisations (UNICEF, UNDCP UNFPA, UNESCO, WHO and the World Bank). Together with the WHO, UNAIDS produces the most comprehensive and widely consulted source of statistics on the HIV/AIDS epidemic, at both the global and regional level. UNAIDS also produces fact sheets and reports on various issues including mother to child transmission, gender, access to drugs, vaccines and young people.
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